Changing Minds Around the World

The Reviews Are In..........

2012-01-24T13:31:00.000-08:00

Changing Minds had one of our One-Day Seminars in Tucson, Arizona, this past weekend, and we wanted to share one of the comments we received in our email box upon our return home. We think it might be the best review we have ever gotten!!!! The photo is of Raquel's son, Noah, all dressed up for Halloween. Isn't he cute?

Hi there,

Regarding the seminar in Tucson... It was fabulous!!! Great information, loved the delivery from all the speakers... Also, have spent this morning trying to schedule appt's to get my son Noah, age 5, on the entire protocol, Prozac included :)

Was very hesitant about having my son take a medication, but the delivery and explanations from Dr Teresa made my decision a very simple one. She truly used both visual explanations as well as personal testimonies to convince me to try this. I believe that this may be the Holy Grail that I have been searching for since my little man was born in 06'. This may truly be the "One Small Step for Mankind" that is needed in today's world!

Thank you!

Raquel mom to Noah Bryce

Ryan, 6 Year Old With DS -- Models For Target

2012-01-17T09:14:00.000-08:00

Take a look at this! It is a clip from NBC's Nightly News story on a 6 year old boy with Down syndrome that is a model for Target. It is a great story and an inspiration for all parents that have children with disabilities. Target includes Ryan in the ad just as they would any other child, never highlighting that he has DS. Yay Target! Let's all let them know how much we like that!

NBC News Story on Ryan

Tell A Friend Today!!

2011-11-22T14:07:00.000-08:00

Did you know that 90% of babies with Down syndrome are aborted? Maybe if we show the world that treatment is available to help their brains.....fewer parents would choose this route. Help spread the word about Changing Minds Foundation. Tell a friend today!

Neal's School Work from 9-13-11

2011-09-14T09:09:00.000-07:00

Neal has been working on writing and saying complete sentences. I don't know about your kids, but he is always trying to get away with just saying one or two words and expecting us to just understand what he means....and we do most of the time, so we let him get away with it. His speech teacher decided to work on complete sentences last week, and ever since then, we have focused on it more at home too. Neal's tutor did this worksheet with him yesterday and she said he had to come up with the sentences all on his own She only helped him with the spelling of some words. We were impressed and wanted to share it with all of you!
(Just click twice on the picture and it will enlarge enough for you to read it.)

Neal just celebrated his 14th birthday and he has been on the protocol now for 6 years. My assistant, Stacy, arrived at work the other day and asked Neal where I was. He said "My mom's having her hair colored." Pretty good sentence, huh? It's all starting to click!

Who Wants To Go To Costa Rica?

2011-08-17T15:17:00.000-07:00

Everyone does! What a beautiful place to relax with your special someone. All you have to do to have a chance at this trip for two to the Four Seasons Resort in Costa Rica at Papgayo is to buy a golf ball or two...or more. We are having a BALL DROP event at our Golf fundraiser where 2000 golf balls will be dropped from a helicopter as it hovers over one of the holes. The ball that goes into the hole or comes closest to the pin is the winner! The more balls you buy......the more chances you have to WIN!! It could be YOU!!! See the link below to our website for details about this fundraiser and how you can participate.

http://www.changingmindsfoundation.org/golf_tournament.html

Could there be a Good Reason to have a prenatal diagnosis?

2011-08-11T01:25:00.000-07:00

There might be a good reason for prenatal diagnosis of Down syndrome and that is to treat the brain chemistry. Right now the only reason for prenatal diagnosis is to search and destroy. 90% of babies with Down syndrome are aborted. I heard a story the other day from a mother with a 4 month old with DS that saddened me. She said that after her baby was born a Physician's Assistant came into her room and asked her if she had had her prenatal screenings? What? What kind of barbarians are we?
Science is revealing so much about Down syndrome but we aren't using it in any practical way. Here is a study of the brain chemistry in 20 week old fetal brains of DS. They measured the neurotransmittors and found that serotonin, GABA, taurine and dopamine are low.

[Neurotransmitters are endogenous chemicals that transmit signals from a neuron to a target cell across a synapse.^[1] ]
These are critical chemicals in brain development. We know how to increase serotonin. SSRI's serotonin reuptake inhibitors.
Taurine is increased by diet. It is found in meat.
Food sources of dopamine increasing tyrosine include almonds, avocados, bananas, dairy products, lima beans, pumpkin seeds, and sesame seeds.

Could these simple steps lead to better brain development in utero. We won't know unless we push researchers to take positive steps in treating the unborn Down syndrome mouse.

Make Plans to Attend the 2nd Annual Golf Classic......or at least Buy a Ball!!

2011-08-04T13:42:00.000-07:00

Changing Minds Foundation's biggest annual fundraiser is coming up on October 28th. It is the Golf Classic, and it will be held at Wildcat Golf Club in Houston, TX. Last year was our first year and it was so successful, thanks to David Moehlman, a CMF parent and the sole organizer of the tournament, that we are doing it again! We hope you will plan to participate in some way. If you golf, you can sign up a team of 4 to play. If you don't, your company can be a corporate sponsor, or you and your family and friends can buy golf balls for the Ball Drop Contest. At the beginning of the tournament, we will have a helicopter hover over one of the holes and drop 2000 golf balls at once. The ball that goes in the hole or is closest to the pin wins! The winner gets a trip for two to the Four Seasons Resort in Costa Rica! For more information about this fundraiser, or to register, go to the link below:

http://www.changingmindsfoundation.org/golf_tournament.html

Below is a photo of Teresa Cody and David Moehlman from last year's Golf Classic

Fun At the Circus !!

2011-07-26T09:23:00.000-07:00

We closed the dental office a couple of weeks ago to take vacation. I took Neal to see the
Ringling Brothers, Barnum & Bailey Circus at Reliant Center. We ran into another DS mom, Melanie Duncan, and her family. She was nice enough to take this photo of me and Neal. We had a great time! Neal loved the elephants and the acrobats the most. It truly is the "Greatest Show On Earth"!

Evansville Is Warm and Wonderful!

2011-07-20T14:59:00.000-07:00

The Changing Minds seminar in Evansville, Indiana, was a big success! We had many parents, teachers and medical professionals there to hear all about the science behind the protocol. Teresa did a great job delivering the information and answering everyone's questions. We sold several DVD's, which is always a strong indicator of interest. We hope that everyone reading this is doing their part to spread the word about available treatment for DS.

Pictured are: (front row) Tess & Mary; (back row) Mercy, Miriam, Stacy, Teresa, Nina & Andy

Would You Like To Write a Review of Changing Minds Foundation?

2011-07-07T09:25:00.000-07:00

We found a website called Great Non-Profits and it is a place where people can write reviews about any non-profit they have personal experience with. We would LOVE it if anyone out there that has any personal experience with Changing Minds Foundation would write a review. I have given you the link below so you can find it easily. Thanks for your help in spreading the word about available treatment for many of the problems and symptoms of Down syndrome.

http://greatnonprofits.org/reviews/changing-minds-inc-1/91605/

Saturday....June 25.....Evansville, IN

2011-06-24T03:24:00.000-07:00

Miriam does a great job on TV. Watch her now. Come join us at the Wired Coffee House Auditorium, 111 NW 4th Street, Evansville, Indiana at 9 am - noon.

Another Look at Ginkgo Biloba

2011-06-23T04:17:00.000-07:00

Ginkgo biloba may help improve memory, and could even protect against Alzheimer's.

September 1 , 2006
Researchers found significant improvement in verbal recall among a group of people with age-associated memory impairment, who took the herbal supplement ginkgo biloba for six months, when compared with a group that received a placebo.

The UCLA study used positron-emission tomography (PET) and found that for people taking ginkgo biloba, improved recall correlated with better brain function in key brain memory centres.

However, actual changes in brain metabolism, measured by PET for the first time, did not differ significantly between the study's two volunteer groups. Researchers noted that although all volunteers taking ginkgo biloba experienced better verbal recall, a larger sample size might be needed to effectively track brain metabolism results.

"Our findings suggest intriguing avenues for future study, including using PET with a larger sample to better measure and understand the impact of ginkgo biloba on brain metabolism," said Dr. Linda Ercoli, lead author of the study and an assistant clinical professor at the UCLA Neuropsychiatric Institute.

Gingko biloba is a Chinese herb often used as a dietary supplement to treat memory loss. The UCLA study and previous controlled clinical trials on ginkgo biloba's effects on verbal recall have yielded conflicting results.

"The research also raises questions regarding the significance of supplement quality and treatment duration," said principal investigator Dr. Gary Small, a UCLA professor on aging and director of the Aging and Memory Research Center at the UCLA Neuropsychiatric Institute. "The Food and Drug Administration does not regulate dietary supplements, and the quality of retail supplies varies widely. We used only the highest grade of ginkgo biloba in conducting our research."

To my surprise and delight I have not found this to be the case. I have found herbal products very consistent.

Small also noted that the six-month UCLA study is one of the first to measure the effects of ginkgo biloba over a longer period of time. Most previous studies have measured the effect of the supplement over 12 weeks or less.

This is a very important point. Most people would be surprised to find out most studies are conducted in very short time frames. Normally, less than 12 weeks.

The study examined the impact of ginkgo biloba, compared to a placebo, in 10 patients, aged 45 to 75, who did not have dementia but complained of mild age-related memory loss. Four subjects received 120 mg of ginkgo biloba twice daily, and six received a placebo or inactive substance such as a sugar pill.

Researchers used cognitive tests to measure verbal recall and PET to measure brain metabolism before and after the treatment regimen. Magnetic resonance imaging was used to determine regions of interest to be examined by PET.

Funding for the study was provided by Dr. Willmar Schwabe GmbH & Co., the John Douglas French Alzheimer's Foundation, the Louis and Harold Price Foundation, the Larry L. Hillblom Foundation and the UCLA Center on Aging.

A study in France, published in the Journal of Gerontology, has revealed interesting results about the role of Ginkgo special extract EGb 761 in the prevention of Alzheimer's disease. Cognitive performance appears to be maintained for longer as a result of long-term treatment with Ginkgo special extract EGb 761. There also appears to be a positive effect in preventing the occurrence of Alzheimer's disease.

Very important point for us with loved ones with Down syndrome.

The primary objective of the Epidemiology of Osteoporosis (EPIDOS) study, a large-scale prospective multicentre study, was to investigate the risk factors associated with femoral neck fracture in elderly women. As numerous health-related data, including drug therapy, were recorded for the subjects over a period of 4 to 7 years, the study data bank lends itself to further analyses. The data analysis presented here investigated factors associated with the development of Alzheimer's disease.

The study enrolled a total of 7598 subjects of at least 75 years of age, 1462 of whom were in the Toulouse centre. On completion of the study, data on the cognitive status of 714 patients in the Toulouse centre were available. 414 who had no cognitive impairment at all on inclusion in the study (score of at least 8 in the Pfeiffer test) were selected from this patient group. Of these, 345 women were still cognitively unimpaired by the end of the study, 69 had developed dementia of the Alzheimer's type.

Interestingly, the women who still had their full cognitive faculties had taken medications such as the Ginkgo special extract EGb 761 [another name for Ginkgo Biloba] or nootropics to stimulate blood circulation (category C4A medicines) significantly more frequently than the women who developed dementia. Additionally, the healthy women significantly more often had been taken these drugs for over 2 years or longer than the dementia patients. In contrast to the other C4A medicines, evidence of the anti-dementia effect of EGb 761 became apparent after only one year of taking this substance.

This finding is significant. It is long term use that made the most difference. So, even if you don't SEE a difference in symptoms know it may help reduce dementia in Down syndrome as well as the elderly.

The findings of this study give every reason to believe that long-term treatment with Ginkgo special extract EGb 761 enables cognitive performance to be maintained for longer, and indicate that the development of Alzheimer's disease can be prevented or at least delayed. Delayed is GOOD!

Original source:http://www.50connect.co.uk

Changing Minds Workshop

2011-06-22T10:28:00.000-07:00

Watch this short tv segment from Evansville, Indiana. Miriam Kauk, the parent of a child with Down syndrome, is promoting an upcoming seminar for the Changing Minds Foundation. Dr. Teresa Cody will be speaking about the Changing Minds protocol and the amazing results that parents, teachers and doctors are seeing in people with DS. The event is sponsored by SMILE On Down Syndrome, a parent organization in Evansville, IN, for parents with loved ones that have Down syndrome.

Changing Minds Workshop

The Facts Hurt

2011-06-22T06:38:00.000-07:00

I saw this news report from the UK. We need to face facts and know Alzheimer's is coming. In my view, the only logical choice is to try a preemptive strike. Let's Heal the brain as much as we can before adulthood. It may not be enough but doing nothing makes me crazy. I suppose I have more fear of the future than I do of using medicine in the present.{ The video loads slowly but it is worth waiting for.}
Watch the report here

New Imaging Shows Down Syndrome Is Slammed With Alzheimer's and We Can See It

2011-06-15T10:46:00.000-07:00

Note: My comments in Pink and important STUFF Highlighted

Reported This Week:

Brain scan identifies patterns of plaques and tangles in adults with Down syndrome



		IMAGE: This is a representative PET-FDDNP brain scans of study subjects. Control subject shows minimal binding compared with other subjects. The older Down syndrome (DS) subject shows higher binding than the... Click here for more information.

In one of the first studies of its kind, UCLA researchers used a unique brain scan to assess the levels of amyloid plaques and neurofibrillary tangles — the hallmarks of Alzheimer's disease — in adults with Down syndrome.

Published in the June edition of the Archives of Neurology, the finding may offer an additional clinical tool to help diagnose dementia in adults with Down syndrome, a genetic disorder caused by the presence of a complete or partial extra copy of chromosome 21.

Adults with this disorder develop Alzheimer's-like plaque and tangle deposits early, often before the age of 40. Previously, the only way to physically detect these abnormal proteins in this population was through an autopsy.

Over the last decade, methods for identifying and imaging the neuropathology of Alzheimer's disease in living patients have been developed. UCLA researchers have created a chemical marker called FDDNP that binds to both plaque and tangle deposits, which can then be viewed through a positron emission tomography (PET) brain scan, providing a "window into the brain." Using this method, researchers are able to pinpoint where in the brain these abnormal protein deposits are accumulating.

Due to individual variability and difficulty in obtaining baseline levels of cognitive function in adults with Down syndrome, such imaging may be useful in helping to diagnose dementia, say researchers.

"Neuroimaging may be a helpful tool in assessing and tracking plaque and tangle development over time in this population," said the study's senior author, Dr. Gary Small, a professor at the Semel Institute for Neuroscience and Human Behavior at UCLA who holds UCLA's Parlow-Solomon Chair on Aging. "Early detection can also lead to earlier interventions and treatments, often before symptoms begin."

This is great news. Next question what can we use and when can we use it?

For this study, researchers administered the FDDNP chemical marker intravenously and then performed PET brain scans on 19 non-demented adults with Down syndrome (average age 37), 10 healthy controls (average age 43) and 10 patients with Alzheimer's disease (average age 66).

I don't know about you but average age of 37 is not very old.

Analysis found significantly higher binding levels of the chemical marker in participants with Down syndrome in all brain regions, when compared with healthy controls. Compared with Alzheimer's disease patients, subjects with Down syndrome showed significantly higher binding levels in the parietal and frontal regions — areas involved in memory, behavior and reasoning.

"The higher level of plaques and tangles may be reflecting the early and extensive accumulation of these deposits seen in individuals with Down syndrome," Small said.

The researchers also discovered significant associations between increased age in those with Down syndrome and higher FDDNP binding values in the parietal, lateral temporal and frontal regions.

"This is one of the first times we've been able to visualize the neuropathology occurring in the living brains of adults with Down syndrome," said study author Dr. Jorge R. Barrio, a professor of molecular and medical pharmacology at the David Geffen School of Medicine at UCLA who holds UCLA's Plott Chair in Gerontology. "The age-related patterns and regional distribution of the plaques and tangles were consistent with the types of deposits that could only be identified previously through an autopsy."

While the FDDNP brain scans didn't differentiate between the two types of abnormal proteins, the areas of accumulation were consistent with earlier autopsy study findings, which had shown that while plaque and tangle pathologies are the same in both Down syndrome and Alzheimer's disease, the deposit patterns are different.

Autopsy studies have also shown that all adults with Down syndrome eventually develop these accumulations of amyloid plaques and tau tangles. But rather than experiencing memory decline and other cognitive losses, as is common with Alzheimer's, aging Down syndrome patients tend to develop behavioral problems.

[37 years old is not eventually]

I can't even comment on the ludicrous description that DS don't experience memory decline. You can't lose what you don't have.

As part of the study, researchers performed cognitive and behavioral assessments of the Down syndrome subjects to see if FDDNP binding levels correlated with assessment results. They found several positive correlations with behavior abnormalities associated with these brain changes, including indifference and inappropriateness.

Oh great what is inappropriateness????

"We found that the behavioral changes in the subjects with Down syndrome correlated with neurological changes in related areas of the brain consistent with the level of FDDNP binding levels to the abnormal proteins," Small said.

They found the correlation between neurological changes and behavioral changes. This means the behavioral changes are a PHYSICAL Change in the brain. It has nothing to do with motivation or desire. It is not purposeful actions. The patient with Down Syndrome is literally crumbling from the inside out.

Small noted that cognitive skills in people with Down syndrome vary considerably and may not have been captured completely in the assessment, which primarily measured memory function. Larger future studies will compare other cognitive tests with FDDNP binding values, he said.

In addition, researchers plan to determine the relative benefits of different forms of PET imaging using various chemical markers, including FDDNP.

###

This study was supported by the National Institutes of Health and the U.S. Department of Energy.

UCLA owns three U.S. patents on the FDDNP chemical marker. The Office of Intellectual Property at UCLA is actively seeking a commercial partner to bring this promising technology to market.

Small, Barrio and study author S.C. Huang are among the inventors. Disclosures are listed in the full study.

Additional UCLA study authors include Linda D. Nelson, Prabha Siddarth, Vladimir Kepe, S.C. Huang and Kevin E. Scheibel.

For more news, visit the UCLA Newsroom and UCLA News|Week and follow us on Twitter.

So what can we do with this information? Should we take action today or wait until we see the eventual (average age 37) decline?

Neal is really learning math!!!

2011-05-19T08:59:00.000-07:00

My 13 year old son, Neal, has a tutor that works with him 2 days per week after school. This week they were working on some double digit math addition. She always writes me a note to say how Neal did that day, and here is her note:

"We had a Mexican stand off today in math. We did about 3 problems together -- then he shut down on me. So I just sat there.... and he started working by himself and got ALL of them right !"

So....I started wondering if maybe he is just capable now of doing it by himself and he gets frustrated and maybe even insulted that his tutor works each problem with him. He is changing and learning in leaps and bounds these days, thanks to the protocol! It is really exciting! Below is his work:

*Notice how he adds the first two numbers and then writes their sum off to the right, then carries the one over and adds the next column.

Neal's 2nd Piano Recital -- He does great!!

2011-05-03T07:57:00.000-07:00

This is a video of Neal, my 13 year old son. He is playing in his second piano recital. He is much less nervous this time. He is playing a song called "Sledding Fun". Neal has his music and he is reading it. He knows all the notes and it sounds like he doesn't miss a single one! I am so proud of him!

Sleep and the GABA Receptor

2011-04-27T13:46:00.000-07:00

I found a remarkable study out of the University of McGill in Montreal, Canada.

"Dynamic changes in GABA A receptors on basal forebrain cholinergic neurons following sleep deprivation and recovery"

"These changes in membrane GABA receptors would be associated with increased GABA-mediated inhibition of cholinergic cells following prolonged waking and diminished inhibition following sleep and could thus reflect a homeostatic process regulating cholinergic cell activity and thereby indirectly cortical activity across the sleep-waking cycle."

OK, Ok translation...... They measured the number of GABA receptors on the cell membrane and found that the number of receptors on the membrane changes when the subject is either sleep deprived or rested. They actually stained the GABA receptors sitting on the membrane. Here is a picture of the GABA receptor (the yellow thing) sitting ON the membrane:

The little yellow things are the GABA A receptors. But the most interesting part is that they circulate in and out of the membrane. They are picked up by a little 'submarine' and brought inside the cell. Here is a picture of the GABA receptors and the submarines:

Now why do we care? Well let's get back to the study above. They found that if the animal was sleep deprived there were many GABA receptors sitting on the membrane. But if the animal was rested, the GABA receptors were inside the cell (postsynaptic neuron) in the submarine. Here is a picture of that:

Again, why do we care? Because the submarine in Down syndrome does not work well. Down syndrome end up with GABA receptors on the membrane longer than normal. Are we in a constant state of sleep deprivation?
Tomorrow we will review the consequences of having the GABA receptor on the membrane too long.

Watch Warren read a level 4-5 book !!!

2011-04-19T08:37:00.000-07:00

Warren is a first grader who was born with Down syndrome. He is taking the CMF protocol and has been taking it for almost 2.5 years. He is doing amazing things! Watch the video below to see for yourself.

Check Out Jordan's Spelling Skills !!

2011-04-14T15:03:00.000-07:00

This is a 16 year old boy with Down syndrome. He has been on the CMF protocol for 5 years. He was one of the first kids to take the protocol. His mom works with him on spelling words each week and she decided to film their session this week. Isn't Jordan amazing??? I think he is!

Fox 19 in Cincinnati Free Seminar April 9th

2011-04-02T06:16:00.000-07:00

Spread the word .... we have a spots left for One Day Free Seminar in Cincinnati, Saturday, April 9! Breakfast, drinks and lunch included. Donations welcome.

Come learn how to help your child with Down Syndrome.

Details of the event
News Coverage Fox 19: Click here

Neal Reads the Newspaper

2011-03-23T14:05:00.000-07:00

Neal's tutor said that she thought he was ready to try and tackle reading the newspaper. So I have made a video of him reading an article about the planet Mercury from the Houston Chronicle. I attached the article so you all can see the words he is saying. Neal is 13 and his voice is changing....he has become a bit froggy and deep! I thought he did pretty well for the first time!

I had to stop taping because the dog started to bark, but I wanted you to see both videos.

Notice what he does when he reads the words "St. Patrick's Day".....I think that is also amazing! He pinches his tutor because they are talking about St. Patrick's Day, even though he doesn't notice she is wearing green!

I have also given you an example of what Neal usually reads. This stuff about George Washington is pretty easy for him and he rattles it off. I should probably film him reading this as well.

A Note From Neal's Tutor

2011-03-09T08:02:00.000-08:00

My son, Neal, has a tutor 2x a week after school. She has been working with him for about 3 years. The best part is she doesn't know anything about Down syndrome. She is a retired teacher and she literally just teaches him. She doesn't know his limitations. Yesterday I came home to this note. There is a political joke --- we are in Texas after all. She doesn't know I have changed anything. I haven't told her about the time-released ginkgo at night.

I have scheduled a sleep study for Neal next Tuesday. We will see if Ginkgo Biloba is allowing more deep sleep and more REM.

Sleep Part I

2011-03-06T06:17:00.000-08:00

Thank you Lexy! Lexy pushed us to look at sleep. There is a group of moms that email each other scientific studies and discuss problems in Down syndrome. We call ourselves the Warrior Moms! Watch out world here we come.
We began looking up all kinds of research on sleep and ran down many bunny trails, but we found one with a pot of gold at the end of the trail....or is that a rainbow.
We are back to the GABA receptor.
The GABA receptor is an (the) inhibitor in the brain. That means it stops the nerve transmission. This is a very good thing. There is a balance between excitatory and inhibitory in the brain. Neither is 'bad', both are 'good'. It is all about balance.
In Down syndrome we are overly inhibited!! What does this mean in the brain, and what does it mean for sleep?
The GABA receptor is always shown sitting in the membrane like the picture below:

But it turns out that it goes in and out of the membrane. There is a mechanism like a lego block (pink), that attaches to the receptor (black), then another piece (purple) attaches to the lego block and the GABA receptor is pulled into the cell. It is no longer available on the surface. This turns down the inhibition. However, in DS we have 2 genes triplicated on the 21st chromosome that affects the structural component (purple) piece in picture below. This sets Down syndrome up for a slower than normal process.

Check out the picture below:

More Tomorrow!!Stay tuned for the most important information I have ever read!!!!!!!

Neal's Work With REM Sleep

2011-03-02T14:19:00.000-08:00

I thought this was pretty good? What do you think?

I really can't wait to show you what he is able to do in 3 or 4 months of 'sleeping'.

I came home yesterday to find these worksheets Neal had done with his tutor. This is tough stuff. His tutor always writes on the paper whether he has done the work by himself. I circled what the tutor commented in red.

can sleep be as easy as GB?

2011-02-25T08:08:00.000-08:00

NO. No. no. it can't be as easy as Ginkgo biloba around the clock. Can a gaba antagonist be that important? I gave Neal GB 120 mg before bed 4 nights in a row. Could that be the answer to the sleeping problem? The next morning he told me ' I slept well and I am in SUCH a good mood!" Can that even be possible? I am not adding words to his sentence or filling in any blanks. That is what he said yesterday morning.
Does it mean we give a GABA antagonist around the clock? I don't know. But it does make sense. Wouldn't it be important to be balanced all day and all night?
This morning he told my husband, "I'm not tired."
Don't jump to any conclusions from only 2 days but I got the idea from a study.
GABA A Receptors Inhibit Acetylcholine Release in Cat Pontine Reticular Formation: Implications for REM Sleep Regulation
The entire study is available online. They used a GABA antagonist and triggered REM sleep. Neal has 2-3% REM in sleep studies [he has had 2]. I'm about to set up a third study. I'll let you know how it turns out.
I don't know why but I never thought about Ginkgo Biloba's half life before. Ginkgo's 1//2 life is about 6 hours and the Biloba piece has about a 3 hour 1/2 life. Arrrgh! I think he ran out over the course of the day and by night he was off balance and overly GABA inhibited again.

Can't get Away From DYRK1A

2011-02-21T17:40:00.000-08:00

I found this picture. Wow! Look at how many things are affected by DYRK1A.
I recommend reading the journal article where I got this. You can download the picture from the journal into a power point slide and then it is clear. Link

We talked about Tau, App and NFATc but did not even define the rest.
It is amazing how many items 1 gene can affect. Unbelievable!!

A Little History Lesson

2011-02-16T09:39:00.000-08:00

I thought it was time for a little history lesson for all the newbies to the DS world. In 1997, Neal was born-I'm dumped into the DS world without any notice. All of a sudden, the internet is something I need. I bought a laptop and dialed up the internet. Can you imagine? how slow could we go......
Research started. I found the library.....pubmed.
Then I found forums where people talked to each other. So, I joined and began to participate. Soon, it became very apparent that there was a lot of bickering going on. Actually, is was down and dirty verbal fighting. Do you know what people were fighting about? Whether or not DS should take vitamins. Are you kidding? We have one of the most complex genetic conditions and people are arguing about vitamins!

I soon walked away from the forums and continued to read the science. A small group of us about 10 emailed each other what we found in the scientific studies. The pace of the research was slow. We wanted something now and it wasn't until 2004 that Stanford published the study about the GABA antagonist. Then, it wasn't until Feb. 2005 that we found ginkgo biloba. Luckily for Neal an avalanche of information came out, compared to the first half of his life. The rest of the Changing Minds Protocol came about in 2006 and 2007. We may not know everything and there is still a long way to go but yesterday I came home and he had written this paragraph with his tutor. I called her this morning to make sure he had done it himself. She said, of course. Tomorrow, I will list all that he is now taking because we have added to the protocol.

Something Good to Share

2011-02-15T10:02:00.000-08:00

Yesterday, Neal came home with a Valentine's that he colored for me and he colored a dragon. The dragon is his new pet but I was so impressed with his coloring. A couple of things have improved: 1) he used 4 different colors [usually he only uses 1 color] 2) he stayed in the lines. I scanned it in.
This is central and detailed vision. He keeps improving daily! [one little brag]

Web Conference - Feb. 17, 2011 at 7 PM

2011-02-14T06:23:00.000-08:00

Down Syndrome Achieves is a Down syndrome organization pushing for more NIH funding for DS research. It would be great if we came out in force to show our support. There is good information available with the little funding DS has had....... but imagine the possiblities.
The squeaky wheel gets the grease!!! Let's squeak!!

LIVE Web Conference:
The Abandonment of DownSyndrome Research

Thursday, Feb. 17

7PM

Next Thursday, Feb. 17, at 7PM, nearly 100 families from as far away as CA, AL, VA, WI, SD, IL, FL, TX, OK, MN, WA, OR, and other states across the country will participate in our LIVE web conference: The Abandonment of Down Syndrome Research.
Whether we choose to acknowledge it or not, constant failures in Down syndrome research affects us all and prevents us from achieving the type of future that we all hope for our loved ones with DS.
This web conference will not be easy for anyone who loves someone with DS. It is a cold hard anguishing look at why DS research has failed for more than 100 years to make breathrough discoveries that would vastly improve the quality of life and health for all of our infants, toddlers, teens and adults swith DS. But there is a way forward...
Take 6o-minutes to learn the facts, and learn more about how and why your help is needed to turn this disastrous trend around. As a parent, grandparent or advocate, I urge you to please join the web conference as well. I hope you will take the time to join us. Click here to register now!
Lito Ramirez
Founder of Down Syndrome Achieves

EGCG, DYRK and Folate ie. green tea, increased gene and a B vitamin... Kinda.....

2011-02-07T10:31:00.000-08:00

I took a minibreak from DYRK1A etc. But it is time to think about it again. Andi commented below about green tea and folate and I was getting to that but it involves another pathway.........Methylation.

Methylation is a very important basic process in the body. In the late 1990's Neal and his buddies with DS sent their blood to a researcher named Dr. Jill James. She discovered that the methylation pathway is disturbed in DS (and in us Moms) because some of the enzymes in the pathway are overexpressed. It is easier to look at a diagram than just to write about it.

Here is an overview of the Methylation Pathway. We are going to talk about the 2 things in red. In the middle of the diagram is CBS (cystathione beta synthase). This enzyme is triplicated on the 21st chromosome which presumably pulls that pathway down.
The second scratchy red is 5-CH3 THF - which is methyl tetrahyrdrofolate.
Have you have heard of folic acid? It is added to every cereal. "Fortified with Folic Acid".

There is a very knowledgable website called Super Down Syndrome that has a terrific explanation about many topics. But one is an explanation about folic acid versus folinic acid.
"...medical professionals still haven’t figured out that folic acid is not the same as the naturally occurring vitamin folate.

Folic acid is a single type of molecule, crystallized in 1943 by a scientist working for the patent medicine company Lederle Laboratories, then a subsidiary of American Cyanamid Corporation. Folic acid is the fully oxidized form of naturally occurring folates, which are found in leafy and green vegetables......

Folate was originally isolated from brewer’s yeast and spinach in the 1930s. Once isolated and exposed to air it becomes unstable and breaks down, and is generally no longer useful in nutrition. But a small amount of natural folate can be transformed by oxidation (a natural process) into folic acid, a much more stable form with a very long shelf life.
While human and animal cells cannot use the folic acid molecule itself in their normal metabolic processes, human cells (principally the liver) can transform folic acid back into many of its metabolically useful folate forms. That’s why folic acid—despite not being found in food—can do so much nutritional good, the best-known example being the prevention of birth defects including spina bifida, cleft lip, and cleft palate."
But what if your population cannot utilize folic acid? It is necessary to supplement with the more active form folinic acid which translates to 5-methyl tetrahydrofolate. Sound familiar? It is the folate in the cycle.

Neal and I for that matter supplement with Folinic acid.

OK here comes the complication from green tea extract and folates. Green tea reduces an enzyme (DHFR) [orange] that converts folic acid tetrahydrofolate in one direction - here is another diagram:

But I now think that the DYRK1A is sufficiently dangerous that it is worth turning it down and then supplementing with a good form of folate. It is important to add B12 (green) as well. You didn't think this was going to be easy did you? The medical profession has thrown their collective hands up for years saying Down syndrome is too complicated to treat. They continue to say there are too many things wrong. True enough. But I think we can unpeel this syndrome like an onion. Don't get discouraged that there is another layer. Be prepared there are more layers to come.
We will look more closely at these pathways because there are more complications than we have discussed today.

Choline Part 2

2011-02-06T05:05:00.000-08:00

Tomorrow we will get back to the green tea extract and DYRK1 A gene because there are more issues to discuss but today let's look at one little study that showed positive results for the Down syndrome mouse.
Here is the study abstract:
Behav Neurosci. 2010 Jun;124(3):346-61.

Perinatal choline supplementation improves cognitive functioning and emotion regulation in the Ts65Dn mouse model of Down syndrome.
Moon J, Chen M, Gandhy SU, Strawderman M, Levitsky DA, Maclean KN, Strupp BJ.
Division of Nutritional Sciences, Cornell University, Ithaca, NY 14853, USA.

Abstract

In addition to mental retardation, individuals with Down syndrome (DS) also develop the neuropathological changes typical of Alzheimer's disease (AD) and the majority of these individuals exhibit dementia. The Ts65Dn mouse model of DS exhibits key features of these disorders, including early degeneration of cholinergic basal forebrain (CBF) neurons and impairments in functions dependent on the two CBF projection systems; namely, attention and explicit memory. Herein, we demonstrate that supplementing the maternal diet with excess choline during pregnancy and lactation dramatically improved attentional function of the adult trisomic offspring. Specifically, the adult offspring of choline-supplemented Ts65Dn dams performed significantly better than unsupplemented Ts65Dn mice on a series of 5 visual attention tasks, and in fact, on some tasks did not differ from the normosomic (2N) controls. A second area of dysfunction in the trisomic animals, heightened reactivity to committing an error, was partially normalized by the early choline supplementation. The 2N littermates also benefited from increased maternal choline intake on 1 attention task. These findings collectively suggest that perinatal choline supplementation might significantly lessen cognitive dysfunction in DS and reduce cognitive decline in related neurodegenerative disorders such as AD.

PMID: 20528079 [PubMed - indexed for MEDLINE]PMCID: PMC2955960 [Available on 2011/6/1]

They supplemented with choline which crosses the Blood Brain Barrier (protective barrier for the brain) with a transport system. Phosphatidylcholine (PC) passes through the BBB because it is fat soluble. I'm always thinking about making it as easy as I can for the body. So, my choice of supplementation is PC as opposed to free choline.

Choline

2011-02-05T04:47:00.000-08:00

I was reading about choline and thought this is a good break from the genes.
Choline is not exactly a vitamin but it is an essential nutrient. We can make a small amount of it but it must be eaten regularly. The Linus Pauling Institute has a terrific write up explaining choline and its functions. They state:

The majority of the body's choline is found in specialized fat molecules known

as phospholipids, the most common of which is called phosphatidylcholine or lecithin . (1)

I bolded the phosphatidylcholine for emphasis. Choline is a very important nutrient.

It is involved in these 5 ways:

Structural integrity of cell membranes
Cell signaling
Nerve impulse transmission
Lipid (fat) transport and metabolism
Major source of methyl groups

Let's look at the structure of the cell membrane. Cell membranes are called a bilayer because they are formed from a double layer of fats and phosphate heads.
The green inside are the fats and the pink balls are the phosphate heads. Choline is essential in the formation of phospholipids ie cell membrane. The liver alone has ~ 300,000 square feet of membrane.
That is more than 4 football fields!
A great article on Phosphatidyl choline that explains the membrane in more detail is on the BodyBio website.

The second major function is cell signalling. If you put cell signalling into google image, it will blow your mind. It is soooooo complex. Here is a good picture of one type of cell signal. Notice it occurs next to the membrane.

Nerve Impulse Transmission is the neurotransmittors like acetylcholine. These are the chemical messangers that jump from one nerve to the next.

Phosphatidylcholine is a required component of fat transportation and processing. Without adequate phosphatidylcholine, fat and cholesterol accumulate in the liver.

Choline is a major source of methyl group which is a carbon and 4 hydrogens. We will come back to this because it is very important in Down syndrome.

Needless to say. Choline is critical for good health and function. It is found in beef and eggs, for example.

Food Serving Total Choline (mg)

Beef liver, pan fried 3 ounces* 355

Wheat germ, toasted 1 cup 172

Egg 1 large 126

Atlantic cod, cooked 3 ounces 71

Beef, trim cut, cooked 3 ounces 67

Brussel sprouts, cooked 1 cup 63

Broccoli, cooked 1 cup, chopped 62

Shrimp, canned 3 ounces 60

Salmon 3 ounces 56

Milk, skim 8 fl oz. 38

Peanut butter, smooth 2 tablespoons 20

Milk chocolate 1.5-ounce bar 20

*A three-ounce serving of meat or fish is about the size of a deck of cards. (1)

Review Again and Again and Again

2011-02-03T09:19:00.000-08:00

Whew!! These blogs have been a lot of science. If you are still with me, let's review.
3 Players:
These genes are at a triple dose in Down syndrome:

DYRK1A
RCAN or (DSCR1)
APP

DYRK1A is triplicated (3X) in Down Syndrome and is involved in cell growth and development.

decrease brain volume (slows cell growth and development)
decreases synaptic plasticity [decreases BDNF (Brain Derived Neurotrophic Factor)- like brain food]
increases the production of the toxic amyloid beta plaque
hyperphosphoralates tau protein which is a structural protein inside the nerves. The tau protein falls off the internal structure leading to collapse of the nerve

RCAN or (DSCR1)

decreases cell growth and therefore brain volume
the DSCR stands for Down Syndrome Critical Region. It has since been renamed to RCAN

APP stands for Amyloid Precursor Protein

3 enzymes cut this protein in different spots
the DYRK1A changes the APP and sets it up to be cut in a toxic manner creating the poisonous amyloid beta plaque.
The amyloid beta plaque is hallmark of Alzheimer's and Down syndrome brain pathology
in a mouse model, 3 times APP alone does not show the same pathological changes seen in Down syndrome
in a mouse model, 3 times APP and 3 times DYRK1A does resemble the brain changes seen in Down syndrome. Also, these mice have similar learning deficiencies seen in Down syndrome.

What can we do to help turn down these genes? Well obviously we need to rebalance the system if we can.

One thing came up over and over in the journal articles. GREEN TEA EXTRACT

Green Tea Extract decreases the expression of the DYRK1A gene.

So, if DYRK1A was expressed at a more normal level, the person with Down syndrome should be able to grow nerve cells and therefore normalize brain volume. Learning and memory should increase with more synaptic plasticity. Forming less amyloid beta plaques should at least delay the onset of toxic plaque build up in the brain. And, structurally, the tau protein should stay more normal therefore, less nerve cells will collapse.

Another journal article, found that ANTIDEPRESSANTS decrease the expression of the RCAN gene. There were some contradictory studies on this point but ANTIDEPRESSANTS also are known to increase BDNF which is probably a good thing in Down syndrome.

Thanks for the comments on facebook. I know this is tough stuff but you don't have to know every detail. You need to understand the overall pathology that is an ongoing problem in Down syndrome. 'WE CAN' help our loved ones with Down syndrome. It is like an onion one layer at a time.

Samples of Neal's work

2011-02-02T12:15:00.000-08:00

I will continue with the science tomorrow..... but I wanted to take a break and share some of Neal's school work with you all. My son, Neal, is 13 years old. He has Down syndrome and he has been on the CMF protocol since he was 8 years old, so about 5 years. Below are some samples of his work with a description or explanation for each.

Here, he did a unit on Clara Barton. There is more to the story, but I only included one page of reading material so you could see the level. He did this work himself.

This one is from a workbook at grade 4-5 level. On the first page, Neal has to decide if the pairs of words are synonyms, antonyms or homonyms. He got them all right! The next page, he had to choose a fairy tale he liked and write sentences about how the story begins, what happens in the middle and how it ends. He also answered a crossword puzzle without having the list of words. I thought it was very good!

Tau Protein and DYRK1A and Nerves

2011-01-29T09:54:00.000-08:00

Let's continue to breakdown the details of the biological happenings and then we will put the information back together into a 'big' picture overview.
The tau protein is an important structural component inside the nerve. The following is an excellent explanation:
"Tau is abundant in neurons and binds to microtubulin where it has a pivotal role in microtubule growth and stability. And if it affects microtubule growth, then it affects not only cellular architecture but also cellular trafficking, since cells use microtubules as motorways to deliver nutrients and other molecules to different destinations. Without the assistance of tau, neurons are then neither able to elongate, nor to regenerate. In AD [Alzheimer's Disease], tau structure is modified via hyperphosphorylation and instead of assisting microtubulin, it creates tangled clumps of fibres in the neurone’s cytosol." (1)

The tau protein is critical to the structure of the nerve and the transportation system inside the nerve. When the tau protein is chemically altered, it loses its ability to connect with the nerve structure and then disrupts it. It is like collapsing bridges in a highway system. There is no way to cross the river and soon the nerve cell dies and disappears.
How is tau protein changed?
The DYRK1A gene instructs the cell to 'phosphoralate' the tau protein

Phosphorylation is the addition of a phosphate (PO4) to a protein or other organic molecule.

Phosphorylation activates or deactivates many protein enzymes.

The best theory is that having 1.5 times of the DYRK1A gene leads to' hyperphosphalation'. This means that phosphate groups (PO4) are added to the tau protein in an excessive manner. The result of this chemical change is that the tau protein falls off of the microtubules inside the nerve, clumps together and the nerve soon collapses.

Here is a video of this process. There is no sound but the animation is very good.

Video of tau protein in AD or DS

Next blog we will put the different pieces together.

(1) http://expasy.org/spotlight/back_issues/118/

Could the DYRK1A gene increase Amyloid Plaques?

2011-01-27T11:39:00.000-08:00

In the last post, we talked about the amyloid plaque and how it gunks up the works (ie. brain). Just to review, Down syndrome have 3 copies of the APP gene, which stands for amyloid precursor protein. But their is a twist to the story, "over-expression of APP alone in mice does not cause the AD-like (Alzheimer Disease - like) [endosome] pathology observed in DS patients." So just having 3 copies of the APP gene does not create the biological disease state that is seen in Down syndrome, mice and people.

So, the next question is what else contributes to the formation of amyloid plaques and therefore, a disease state?

We are back to our friendly DYRK1A gene. Having 3 copies of DYRK1A plus 3 copies of APP creates the perfect storm that does result in the pathology seen in patients with Down syndrome. Another link in the chain.

{We need a big white board to keep track of all the connections.}

OK back to the science:

Let's look at how DYRK1A affects APP.

"DYRK1A and APP give rise to AD pathology in DS brains through

DYRK1A-mediated phosphorylation of APP." (1)

Phosphorylation means to activate or deactivate protein enzymes

"The over-expression of DYRK1A in DS brains may accelerate the development of

AD pathogenesis through phosphorylation of the Thr668 residue of APP, a

modification that may be necessary for the APP cleavage events that give rise to Aβ (amyloid beta plaque)."(1)
Let's review :

The brain chemistry in Down syndrome is producing the toxic amyloid plaques at a higher rate than normal.
A mouse model with only triple APP does not show the same pathology as seen in Down syndrome.
A mouse model with only triple DYRK1A does show learning and memory deficiencies similar to Down syndrome.
A mouse model with a triple APP and DYRK1A show the same pathology seen in human Down syndrome brains.

At the end of the study cited above, they say, "therapeutics that inhibit DYRK1A expression and/or kinase activity might suppress the early-onset of AD and mental retardation in DS patients." (1)
A few potent DYRK1A inhibitors have been described but the one that keeps popping up in these journal articles is epigallocatechin 3-gallate (EGCG), in other words, green tea extract.
We will continue this scientific avenue looking at tau protein (strucural component inside nerves) next. Review the video in previous post.

Dual-specificity tyrosine(Y)-phosphorylation regulated kinase 1A-mediated phosphorylation of amyloid precursor protein: evidence for a functional link between Down syndrome and Alzheimer’s disease (1)

Amyloid Plaques and APP

2011-01-25T10:06:00.000-08:00

APP (amyloid precursor protein) is a gene which is on the 21st chromosome so in the case of Down syndrome we have 3 copies instead of 1 or 2.

"The APP gene provides instructions for making a protein called amyloid precursor protein. This protein is found in many tissues and organs, including the brain and spinal cord (central nervous system). Little is known about the function of amyloid precursor protein. Researchers speculate that it may bind to other proteins on the surface of cells or help cells attach to one another. Amyloid precursor protein is cut by enzymes to create smaller fragments (peptides), some of which are released outside the cell." (1)

For a great visual of how the APP is cut watch this video:
{The screen is cut off for some reason, here is the link to youtube}

Amyloid precursor protein is cut by enzymes to create smaller fragments (peptides), some of which are released outside the cell. Two of these fragments are called soluble amyloid precursor protein (sAPP) and amyloid beta peptide. Recent evidence suggests that sAPP has growth-promoting properties and may play a role in the formation of nerve cells (neurons) in the brain both before and after birth. Other functions of sAPP and amyloid beta peptide are under investigation.
As shown in the animation, beta secretase enzyme cuts the amyloid precursor protein in the wrong spot so that when the gamma secretase enzyme makes its usual cut the protein is now insoluble and clumps together to form plaques. The plaques continue to accumulate eventually clogging the brain and destroying neurons. No one knows exactly when amyloid plaques develop in Down syndrome just that APP gene is at a dose of 1.5 times that of normal.
"When they reach 30 or 40 years of age, individuals with Down syndrome develop amyloid plaques in their brains identical to those found in the brains of Alzheimer's patients, leading to similar symptoms such as loss of nerve cells and dementia." (1)
1) Read more at Suite101: Alzheimer's Disease Linked to Down Syndrome: Amyloid Protein Causes Damage to Cells in Both Conditions http://www.suite101.com/content/alzheimers-disease-linked-to-down-syndrome-a191444#ixzz1C4Fs68os

What do we do next?

2011-01-24T05:43:00.000-08:00

The one thing I have found that turns down the DYRK1A is green tea extract. It is widely available and fairly inexpensive. What dose do we need? I don't know. I started giving Neal 1500mg per day. Is that too much or is it too little?????
This is where basic research comes in to answer these questions.
A friend sent an interesting study that said antidepressants turned down the DSCR (or RCAN1) gene expression. http://www.ncbi.nlm.nih.gov/pubmed/17207580
So the 2 things we have at this moment are Green Tea Extract and Antidepressants.

Another Piece of the Complicated Puzzle

2011-01-18T14:17:00.000-08:00

As we have been discussing, in the case of Down syndrome, the balance of DYRK1A gene and DSCR1 gene is off. They are at 1.5 times the normal amount. Another aspect of this imbalance that may make it a really big deal is that one of the major things this affects is the immune system.

Immunosuppressant drugs are used to turn down the immune system when, for example, a person has an organ transplant. The drugs help to turn down the immune system so that the organ is not rejected. The way immunosuppressant drugs work is exactly like having too much DYRK1A and DSCR1. The person with Down syndrome is in a constant state of suppressing their immune system.

Synaptic Plasticity and Down syndrome

2011-01-17T08:52:00.000-08:00

As promised, SYNAPTIC PLASTICITY. Ooooh! But seriously, it's very, very important.
Synaptic Plasticity literally means the ability of the connection between two nerves to strengthen when learning something or weaken when forgetting something. I know, that may sound funny but it is very important to be able to forget as well as remember.
The end of the nerve has a bouton which is like a little pod. In that pod are little containers of chemicals called neurotransmittors. When an electical charge comes down the nerve, the containers of neurotransmittors are moved to the edge and they release their chemicals into the space between the two nerves. At this point, the chemicals attach themselves to receptors on the next nerve and open a tube that allows calcium, for example to rush into the nerve changing the charge sending the electrical charge down the second nerve. In other words, the way a nerve works is first there is an electrical charge which turns into a chemical change and back into electrical charge in the connecting second nerve.
Here are a few pictures:

Here is a short animation of the synapse and how it works:

Now, back to synaptic plasticity and Down syndrome. The ability of the synapse to adapt and learn is dependent on BDNF (Brain Derived Neurotophic Factor). Oh no, more letters!!

This chemical (BDNF) is a necessary part of learning. When the amount of DYRK1A was decreased, BDNF increased and so did synaptic plasticity. So having 1.5 times of DYRK1A as much as normal, decreases the ability of the synapse to change and therefore, learn.

How DYRK1A Affects the Brain and Memory

2011-01-14T06:33:00.000-08:00

The last blog involved the specific way DYRK1A worked. Now let's look at how it affects the brain and memory. Here are the 3 big ways that research has discovered to date. Remember, researchers keep adding details every year.

The first way DYRK1A affects the brain is from the beginning it is involved in the development of the brain. Specifically, it affects the normal brain volume.

The second affect is disrupting synaptic plasticity. Synaptic plasticity is the ability of the connection, or synapse, between two nerves to change. This connection strengthens and weakens as things are learned and forgotten.

The third big category that DYRK1A affects is memory consolidation. Memory consolidation is a process that stabilizes a memory trace after the initial acquisition.

This gene is turning out to be super-duper important! Let's explore the first piece of brain development.

"DYRK1A is a major player in both cell cycle regulation and synaptic plasticity. DYRK1A levels in the brains of DS subjects with free trisomy were found approximately 1.5-fold higher than those in normal subjects indicating that this protein is overproduced in a gene dosage-dependent manner in Down syndrome." Guedj F et al.

Since it is involved in cell growth and reproduction, it is essential during development. In other words, having the correct dose of DYRK1A is an integral part of brain growth. At 1.5 times the amount, cell growth is disrupted, thereby, leading to low brain volume.

Is there anything we can do about the DYRK1A? Lucky for us, there are many studies looking at this problem.

There is one study published in 2009 called 'Green tea polyphenols rescue of brain defects induced by overexpression of DYRK1A.

I love the word 'rescue.'

PLoS One. 2009;4(2):e4606. Epub 2009 Feb 26.

'Green tea polyphenols rescue of brain defects induced by overexpression of DYRK1A.'

Guedj F, Sébrié C, Rivals I, Ledru A, Paly E, Bizot JC, Smith D, Rubin E, Gillet B, Arbones M, Delabar JM.

Functional and Adaptive Biology, Université Paris Diderot-Paris7 and CNRS, Paris, France.

The complete study is free online. Here is the link:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2645681/?tool=pubmed

But in essence they reversed or as they put it rescued, brain volume, learning deficits and synaptic plasticity feeding the transgenic mice green tea polyphenols. Transgenic mice have been genetically altered from the wild type mice or normal mouse.

"We investigated the possibility of correcting these phenotypes through modulation of DYRK1A activity. EGCG can cross the blood-brain barrier and the placental barrier. EGCG is the major catechin in green tea leaves (40 to 50% of the total catechins amount). Indeed, feeding a green tea drink to mice (usually drinking 3–5 ml/day) is equivalent to administering 0.6 mg/day pure EGCG."

Green tea reduces the activity of DYRK1A. In essence returning the gene expression to a more normal amount.

They fed mice a green tea drink from gestation (started during initial mating period) to adulthood and saw positive results. Using MRI technology the researchers measured brain volume.

To test learning deficits, researchers use what is called a novel object recognition test. This test is where the mice are trained with 2 objects and then one of the objects is changed to a new object. Mice should spend most of their time checking out the new object and less time with the familiar object.

The results were significant. The transgenic mice fed the green tea had no learning deficit while the transgenic mice fed only water had close to zero memory capabilities.

Tomorrow........the burning question...what is synaptic plasticity? And why is it important?

Two Important "D" Genes -- DYRK1A and DSCR1

2011-01-12T14:31:00.000-08:00

Science is full of long names shortened by using acronyms. Don't let it bother you. Just roll with it. When scientists came up with fun names, like sonic hedgehog (after the video game), they got in trouble because then it becomes a disease of the same name. Ooops! So, for the most part scientist are stuck naming proteins, and other chemicals by their function.

The 2 we are going to look at are DYRK1A and DSCR1.

DYRK1A is a gene on the 21st chromosome It's name is really confusing. It literally stands for.....Dual specificity tyrosine-phosphorylation-regulated kinase 1A. Now you know why everyone just calls it DYRK1A.

The gene DYRK1A gives the instruction for the cell to make an enzyme by the same name, DYRK1A. Just for those who skipped biology class, enzymes are mainly proteins, that speed up certain chemical reactions. Enzymes are used inside of cells to aid in cell growth and reproduction.

An example of enzymes that most people are aware of are digestive enzymes. They speed up the breakdown of our food.

Back to DYRK1A and DSCR1......

DSCR1 is another gene on the 21st chromosome. And it stands for 'Down syndrome critical region 1'. Everyone has this gene. Stanford's DS mice had the symptoms of down syndrome even if this was the only gene that was tripled.

There are a few more letters you have to follow. NFATc. I know, I know.... but this is the key to the problem in this chemical pathway in Down syndrome. NFATc (or Nuclear factor of activated T-cells, cytoplasmic 1) is a protein that is very, very important in neurogenesis (new nerves being created), cell proliferation, cytokinesis (literally means cell movement but is involved in cell division) and cellular differentiation (a cell becomes a certain tissue for example, a nerve cell or a skin cell).

Now let's get to the nuts and bolts of these genes/enzymes and what they do. I found a picture that shows exactly what is going on.

The picture on the left is a picture of a normal functioning cell. There is an {'a'} above it. The picture on the right is of a Down syndrome cell and has a {b} above it.

Notice how calcium comes into the cell at the top and triggers a pathway called Calcineurin (green arrow) and that in turn triggers NFATc which is necessary for cell growth.

In the Down syndrome cell, {b}, there is 1.5 times the amount of the 2 genes discussed above. Remember they are just letters. DSCR1 (pink oval) and DYRK1A (pink oval). The DSCR1 turns down (as in volume) the Calcineurin pathway (red sideways T) and at the same time DYRK1A pulls the NFATc (green oval) out of the nucleus.

The abnormal balance limits cell growth and proliferation. So, these genes are really disrupting new nerve growth, healthy cell production and normal regeneration of cells. What does this mean for Down syndrome? We will delve into the consequences of the imbalance tomorrow.

Mining For Down syndrome Data

2011-01-11T10:18:00.000-08:00

Down syndrome is a complex genetic condition. In order to help everyone understand how the extra chromosome affects the body, I am going to post a series of blogs on a number of specific subjects. I love to research and read the latest findings.....and by writing about them, I can help all of you learn about the latest research without having to go find the information yourselves. It will force me to put the pieces of information together into some logical order.

I read somewhere that if you want to really learn something, try teaching it to someone else! So, that's what I am going to do.

This is the most exciting time for Down syndrome! The scientific breakthroughs are coming faster and faster. We need these great researchers, but who is putting the pieces together? I think of myself as a data miner. Somebody needs to dig out these precious nuggets of information and link them together. Stay tuned for a year of understandable science.

PETITION REQUEST:

2010-12-30T08:28:00.000-08:00

Today is the day I need you to step forward with a small act to support Down Syndrome research. No money, just your name and words are needed.
PETITION REQUEST:

We are on the verge of revolutionary human clinical FDA trials for medication to raise learning, memory and communication in Down Syndrome. These trials are expensive, more than charity can handle, and more than pharma companies will take on when they are unsure if a market exists. We can show them a market exists and influence the National Institute of Health to help bridge the funding gap NOW by having you join a petition and by presenting your commentary!

There is a major grant request under review at the NIH to initially fund a start up pharmaceutical's FDA trial of a medication developed by Stanford DS researchers that has improved learning performance in DS mice and shown to be usable in humans. We MUST get this funded.

In 2009, the NIH provided 18 million dollars for DS research. DS affects about 400,000 Americans. In contrast, autism (which affects 560,000) got 132 million in NIH money, MS (affecting 400,000) got 137 million, and Parkinsons got 162 million. Why? Because the families of people with these issues are very active in lobbying for this and being involved at the federal level, and we have not been. The view from the govt and pharma is that we don't care about developing the medications that are within reach that could really change our kids outcomes in life, so they focus elsewhere. Time for things to change!

So join me today in saying this to the NIH decision makers:

We, the members of the Down Syndrome community, strongly urge support for the development of FDA approved medication to raise learning, memory, and communication for those with DS. We particularly support this grant application: the NINDS Cooperative Program in Translational Research - Small Business Awards (SBIR [U44]), Principal Investigator Elizabeth Moyer, PhD.

Your steps:
1) email me to add your name and email address to the petition. just say "add" with your name and email address
2) if possible, take 5 minutes and email me a few sentences showing your support--include your name, address, and telephone #. This will be far more powerful than just the petition. I will consolidate comments and give to the head of the grant application process.
3) call or email me if you need more info

Time is critical in this process, so please act now! We want to deliver the petition by January 4th!!! And please forward to all your friends and family.

Merry Christmas and Happy New Year!

Thank your for taking the time to help. The squeaky wheel gets the grease. Help us get the grease!

Sincerely,
Teresa Cody
email me at changingmindsfoundation@gmail.com

Confirmation....yet again!

2010-12-08T11:52:00.000-08:00

Well, many of you keep asking for confirmation that the research we found is true about poor memory in Down syndrome. Here is another one......more confirmation that memory is definitely a problem in DS! This is recent research, notice the date of May 2010. For those of you who don't speak Science lingo, "hippocampal dentate gyrus" means memory in plain English.

Cereb Cortex. 2010 May;20(5):1131-43. Epub 2009 Aug 26.

Enlarged brain ventricles and impaired neurogenesis in the Ts1Cje and Ts2Cje mouse models of Down syndrome.

Ishihara K, Amano K, Takaki E, Shimohata A, Sago H, Epstein CJ, Yamakawa K.

Laboratory for Neurogenetics, RIKEN, Brain Science Institute, Saitama 351-0198, Japan.

Abstract

Down syndrome (DS) is the most common cause of mental retardation. Although structural and neurogenic abnormalities have been shown in the brains of DS patients, the molecular etiology is still unknown. To define it, we have performed structural and histological examinations of the brains of Ts1Cje and Ts2Cje, 2 mouse models for DS. These mice carry different length of trisomic segments of mouse chromosome 16 that are orthologous to human chromosome 21. At 3 months of age, ventricular enlargements were observed in both Ts1Cje and Ts2Cje brains at a similar degree. Both mice also showed decreases of the number of doublecortin-positive neuroblasts and thymidine-analog BrdU-labeled proliferating cells in the subventricular zone of the lateral ventricles (LVs) and in the hippocampal dentate gyrus at a similar degree, suggesting impaired adult neurogenesis. Additionally, at embryonic day 14.5, both strains of mice, when compared with diploid littermates, had smaller brains and decreased cortical neurogenesis that could possibly contribute to the ventricular enlargements observed in adulthood. Our findings suggest that the trisomic segment of the Ts1Cje mouse, which is shared with Ts2Cje, contains the genes that are responsible for these abnormal phenotypes and could be relevant to the mental retardation associated with DS.

PMID: 19710359 [PubMed - indexed for MEDLINE]

Seminar in Madison Wisconsin was a HUGE Success

2010-11-23T12:20:00.000-08:00

Changing Minds Foundation is truly thankful to our wonderful hosts, Russ and Lexy Austin over the weekend. The one day seminar in Madison, WI was a huge success. Over 100 parents and educators attended.

We would also like to thank the American Family Insurance Company for donating the venue. It was perfect.

Thanks to everyone who made a donation. We were able to cover the cost of the conference and box lunch so we can do another one. Our goal is to hold 5 more seminars in 2011. If you are interested in hosting, let Stacy know at changingmindsfoundation@gmail.com

We hope everyone learned lots. And if you have any questions, don't hesitate to contact us.

Mac is the reason we went to Madison and he is one of the cutest kids ever. Watch Mac on the news - he is already a star. Watch Mac and Lexy on NBC News

My new motto is "If nothing ever changed, there would be no butterflies!"

Golf Tournament for Down Syndrome Awareness

2010-10-28T05:30:00.000-07:00

Today is the first Annual Golf Tournament for the Changing Minds Foundation in Houston, Texas. We hope to raise awareness and funds for research and treatment options. David and Millicent Moehlman, parents of Alex (who has Down syndrome), have dedicated themselves to organizing the entire event. There is a full slate of golf teams and an exciting ball drop (2000 golf balls from a helicopter - closest to the pin wins a trip to Cabo). We will post video of the ball drop and the golf event tomorrow. Stay tuned.

Another Study Showing Improved Mental Abilities in Down Syndrome

2010-10-21T09:18:00.000-07:00

The following research study showed that continuous use of the GABA antagonist, PTZ rescued the mental abilities of the Down syndrome mouse. The GABA antagonist that is available to us is the over the counter Ginkgo Biloba, specifically the biloba part.
The researchers are proving the positive effects of this class of medicine in the lab but we are living with these improved mental abilities. Here is a link to Joanne Mothes, tutor for kids with DS and her observations:
http://www.youtube.com/watch?v=fTKrz4dH5uk

Neurosci Lett. 2008 Mar 5;433(1):22-7. Epub 2008 Jan 15.

Chronic pentylenetetrazole but not donepezil treatment rescues spatial cognition in Ts65Dn mice, a model for Down syndrome.

Rueda N, Flórez J, Martínez-Cué C.

Department of Physiology and Pharmacology, Faculty of Medicine, University of Cantabria, Santander, Spain.

Abstract

The most commonly used model of Down syndrome, the Ts65Dn (TS) mouse, is trisomic for most of the region of MMU16 that is homologous to HSA21. This mouse shares many phenotypic characteristics with people with Down syndrome including behavioral and cognitive alterations. The objective of this study was to analyze the ability of two drugs that improve cognition in different experimental models, the acetylcholinesterase inhibitor donepezil and the non-competitive GABA(A) antagonist pentylenetetrazole (PTZ), to improve the cognitive deficits found in TS mice (Down syndrome mouse). The drugs were administered p.o. (by mouth) to TS and CO (contol or typical) mice for 8 weeks and a behavioral characterization was performed. Sensorimotor abilities, including vision, hearing, strength and motor coordination, as well as locomotor activity in the home cage, were not modified by any chronic treatment in TS and CO mice. TS mice showed altered equilibrium in the aluminium rod, and this effect was larger under PTZ treatment. This result may indicate a potential adverse effect of PTZ in Ts65Dn mice. Learning and memory were evaluated in TS and CO mice after both treatments in the Morris water maze. Donepezil administration did not modify learning and memory in animals of any genotype. On the other hand, PTZ administration rescued TS performance in the Morris water maze.

PMID: 18226451 [PubMed - indexed for MEDLINE]

Could It Be As Easy As Vitamin E?

2010-10-18T14:49:00.000-07:00

Degeneration is a problem for all of us, but it is especially problematic in Down syndrome. It has been well established that loss of neurons is an enormous problem and leads to early decline in function. In the study below, they treated the DS mice with vitamin E. The antioxidant action of the vitamin E improved memory in the DS mice. This study is available free online.

Exp Neurol. 2009 Apr;216(2):278-89. Epub 2008 Dec 10.

Cholinergic degeneration and memory loss delayed by vitamin E in a Down syndrome mouse model.

Lockrow J, Prakasam A, Huang P, Bimonte-Nelson H, Sambamurti K, Granholm AC.

Department of Neuroscience, and the Center on Aging, Medical University of South Carolina, 173 Ashley Avenue, Charleston, SC 29425, USA.

Abstract

Down syndrome (DS) individuals develop several neuropathological hallmarks seen in Alzheimer's disease, including cognitive decline and the early loss of cholinergic markers in the basal forebrain. These deficits are replicated in the Ts65Dn mouse, which contains a partial trisomy of murine chromosome 16, the orthologous genetic segment to human chromosome 21. Oxidative stress levels are elevated early in DS, and may contribute to the neurodegeneration seen in these individuals. We evaluated oxidative stress in Ts65Dn mice, and assessed the efficacy of long-term antioxidant supplementation on memory and basal forebrain pathology. We report that oxidative stress was elevated in the adult Ts65Dn brain, and that supplementation with the antioxidant vitamin E effectively reduced these markers. Also, Ts65Dn mice receiving vitamin E exhibited improved performance on a spatial working memory task and showed an attenuation of cholinergic neuron pathology in the basal forebrain. This study provides evidence that vitamin E delays onset of cognitive and morphological abnormalities in a mouse model of DS, and may represent a safe and effective treatment early in the progression of DS neuropathology.

PMID: 19135442 [PubMed - indexed for MEDLINE]PMCID: PMC2704550Free PMC Article

Validation for Treatment of the Mental Challenges in Down Syndrome

2010-10-12T03:13:00.000-07:00

The following was written by Linda Blevins, one of Changing Minds Foundation's founding members. Her son with DS is 16 and been on treatment for 5 years.

Article written by: Linda Blevins
Choline improves Cognition in Down syndrome mice models.
The Changing Minds Foundation protocol is based upon scientific research. The newest research supports the CMF science based protocol for the treatment of cognitive challenges in Down syndrome.
CMF protocol recommends the use of phosphotidyle choline (PC) rather than just plain choline. PC is more potent and is the active form the body needs. The link to the CMF web site explains more about PC. http://www.changingmindsfoundation.org/documents/phosphatidyl_choline.html

A number of scientific studies have vailidated the CMF protocol which targets critical cycles that function poorly in Down syndrome. These cycles produce invaluable neurotransmitters that are needed for learning, focus, attention, memory production and growing neurons for connection and signalling. (Who doesn't think that's important???)..Though sometimes we don't appreciate the new behaviors that come from growing a brain. Yet, I love the educational progress. Jordan's current school lessons examples:

--Spelling words: several, grumble, putrid

--Vocabulary words: etiquette, obnoxious
Linda Blevins

Science News

http://www.sciencedaily.com/releases/2010/06/100603132456.htm

More Choline for Pregnant, Nursing Women Could Reduce Down Syndrome Dysfunction, Guard Against Dementia

ScienceDaily (June 4, 2010) — More choline during pregnancy and nursing could provide lasting cognitive and emotional benefits to individuals with Down syndrome and protect against neurodegenerative conditions such as Alzheimer's disease, suggests a new Cornell study of mice.
The findings, published June 2 in Behavioral Neuroscience, could help lead to increasing the maternal dietary recommendations for choline (currently 450 milligrams a day during pregnancy, 550 milligrams for lactation), a nutrient found in egg yolks, liver, nuts and such vegetables as broccoli and cauliflower.

"We found that supplementing the maternal diet with additional choline resulted in dramatic improvements in attention and some normalization of emotion regulation in a mouse model of Down syndrome," said lead author Barbara Strupp, professor of nutritional sciences and of psychology. The researchers also found evidence for "subtle, but statistically significant, improvement in learning ability in the non-Down syndrome littermates."

In addition to mental retardation, Down syndrome individuals often experience dementia in middle age as a result of brain neuron atrophy similar to that suffered by people with Alzheimer's disease. Strupp noted that the improved mental abilities found in the Down syndrome mice following maternal choline supplements could indicate protection from such neurodegeneration "in the population at large."

Strupp and her co-authors tested Down syndrome model mice born from mothers fed a normal diet and those given choline supplements during their three-week pregnancy and three-week lactation period, as well as normal mice born from mothers with and without additional choline. The choline-supplemented mothers received approximately 4.5 times more choline (roughly comparable to levels at the higher range of human intake) than unsupplemented mothers.

At six months of age, the mice performed a series of behavioral tasks for about six months to assess their impulsivity, attention span, emotion control and other mental abilities.

In addition to dramatic improvements in attention, the researchers found that the unsupplemented Down syndrome model mice became more agitated after a mistake than normal mice, jumping repeatedly and taking longer to initiate the next trial, whereas the choline-supplemented Down syndrome model mice showed partial improvement in these areas.

"I'm impressed by the magnitude of the cognitive benefits seen in the Down syndrome model mice," Strupp said. "Moreover, these are clearly lasting cognitive improvements, seen many months after the period of choline supplementation."

Strupp noted that the results are consistent with studies by other researchers that found increased maternal choline intake improves offspring cognitive abilities in rats. However, this is the first study to evaluate the effects of maternal choline supplementation in a rodent model of Down syndrome. This is also one of the few studies that has evaluated offspring attentional function and effects in mice, rather than rats, Strupp noted.

Previous studies of humans and laboratory animals have shown that supplementing the diets of adults with choline has proven to be largely ineffective in improving cognition. "Although the precise mechanism is unknown, these lasting beneficial effects of choline observed in the present study are likely to be limited to increased intake during very early development," Strupp said.

The study, funded in part by the National Institutes of Health (NIH), was part of the dissertation of Jisook Moon, Ph.D. '06. Other Cornell collaborators included Myla Strawderman, research associate in nutritional sciences; David Levitsky, professor of nutrition and of psychology; May Chen '07 and Shruti Gandhy '07.

Strupp and collaborators have received additional NIH funding to study the neural mechanisms underlying the positive cognitive effects of perinatal choline supplementation observed in this study.

Early Pharmacotherapy????

2010-10-10T04:20:00.000-07:00

An outstanding piece of evidence emerged June of this year. Early treatment of the Down syndrome mouse "restores" cognitive performance. They didn't say "invents" cognitive performance. They say RESTORES. This implies that it is there waiting to be unleashed. And in fact, that is exactly what we observe with the children treated with the CMF protocol. The medicine unveils the awesome person inside.

The medicine used in this study was prozac (fluoxetine generic name). The nerves don't grow or develop properly in the memory area of the brain in Down syndrome. With early treatment with prozac, these DS mice had more normal brain development and had a complete recovery of memory task performance.

All I can say is WOW! We should be dancing on the rooftops and down on our knees thanking God. How easy is this. A known drug with 30 year history and cheap (as low as $3/ month at Walmart).
Watch John (5yo) in action who has been treated with prozac since he was 2 years old:
http://changingmindsfoundation.org/documents/videoblog.html

Here is an abstract of the study mentioned above:

J Neurosci. 2010 Jun 30;30(26):8769-79.

Early pharmacotherapy restores neurogenesis and cognitive performance in the Ts65Dn mouse model for Down syndrome.
Bianchi P, Ciani E, Guidi S, Trazzi S, Felice D, Grossi G, Fernandez M, Giuliani A, Calzà L, Bartesaghi R.
Department of Human and General Physiology, University of Bologna, I-40126 Bologna, Italy.

Abstract
Down syndrome (DS) is a genetic pathology characterized by intellectual disability and brain hypotrophy. Widespread neurogenesis impairment characterizes the fetal and neonatal DS brain, strongly suggesting that this defect may be a major determinant of mental retardation. Our goal was to establish, in a mouse model for DS, whether early pharmacotherapy improves neurogenesis and cognitive behavior. Neonate Ts65Dn mice were treated from postnatal day (P) 3 to P15 with fluoxetine, an antidepressant that inhibits serotonin (5-HT) reuptake and increases proliferation in the adult Ts65Dn mouse (Clark et al., 2006). On P15, they received a BrdU injection and were killed after either 2 h or 1 month. Results showed that P15 Ts65Dn mice had notably defective proliferation in the hippocampal dentate gyrus, subventricular zone, striatum, and neocortex and that proliferation was completely rescued by fluoxetine. In the hippocampus of untreated P15 Ts65Dn mice, we found normal 5-HT levels but a lower expression of 5-HT1A receptors and brain-derived neurotrophic factor (BDNF). In Ts65Dn mice, fluoxetine treatment restored the expression of 5-HT1A receptors and BDNF. One month after cessation of treatment, there were more surviving cells in the dentate gyrus of Ts65Dn mice, more cells with a neuronal phenotype, more proliferating precursors, and more granule cells. These animals were tested for contextual fear conditioning, a hippocampus-dependent memory task, and exhibited a complete recovery of memory performance. Results show that early pharmacotherapy with a drug usable by humans can correct neurogenesis and behavioral impairment in a model for DS.

PMID: 20592198 [PubMed - indexed for MEDLINE]

You Can See It In Their Eyes

2010-09-22T12:07:00.000-07:00

Have you ever heard the expression "The eyes are the windows to the soul"? Well, they may actually be the windows to the brain as well. I read a study from Science Daily that says researchers have found a link to Alzheimer's Disease in the eyes of children with Down syndrome. That link is actually a protein called amyloid-[beta]. It forms plaque in the brains of Alzheimer's patients and causes cataracts in the eyes of children with DS. Can this mean that if your child with DS has cataracts that are caused by this toxic protein they might also get early onset Alzheimer's Disease? Could be. It's been shown that 100% of people with Down syndrome get Alzheimer's disease, and many of them get it very early in their lives. "This is because they have an extra copy of a key Alzheimer's gene that leads to increased amyloid-[beta] accumulation in the brain." says Goldstein (the lead researcher in this study). He also said that the scientists are working to develop a scanner that would test the amount of amyloid-[beta] in the lens and therefore be able to possibly provide early detection. You can read the study for yourself at the link below. I have also provided another link that talks about many other eye problems that are faced by people with DS.

http://www.sciencedaily.com/releases/2010/05/100520212611.htm

http://www.ndss.org/index.php?option=com_content&view=article&id=175%3Avision-and-down-syndrome&catid=60%3Aassociated-conditions&Itemid=88&limitstart=1

1st Annual Golf Tournament for Down Syndrome

2010-09-16T06:50:00.000-07:00

Benefitting the Changing Minds Foundation

October 28, 2010

11:30am

Wildcat Golf Club

The Lakes Course

12000 Almeda Road
Houston, Texas 77045

http://www.wildcatgolfclub.com/

One of our CMF parents, David Moehlman, has put together a fundraising golf tournament to benefit Changing Minds Foundation. We are currently registering teams of 4 for $500. The event will include lunch and dinner, awards & prizes, as well as a silent auction. We need everyone's help to make this event a success.
So many of you may be thinking....

I don't play golf.

I don't live in Houston.

How could I get involved?

Well, I have the answer for you and it's very simple. Enter our Golf Ball Drop Event and purchase as many golf balls as you'd like for $25 each. We'll assign you a number to each golf ball purchased and on the day of the tournament all balls will be dropped from a helicopter hovering over the driving range. The first ball to land in the designated hole (or closest to the pin) wins a trip for two to Cabo San Lucas, Mexico. The Ball Drop is limited to 2,000 balls and the deadline to enter is October 25th, 2010. You do NOT have to be present to win. We're a 501c 3 charitable organization so your donation is tax deductible.

To purchase golf balls for entrance into the CMF Ball Drop, to register to play golf or to view a short video of an actual Golf Ball Drop, go to:
http://www.changingmindsfoundation.org/golf_tournament.html

You can make your purchase through Paypal. If you do not have a Paypal account, you can still use Paypal and pay with any major credit card. If you prefer to mail a check, go to the above web link to get the form and address for Changing Minds Foundation.

Lastly, for those of you wondering where your money will be going, it's very simple: Research. For example, the Down Syndrome Research Facility at Stanford University is making extensive progress in the laboratory to improve the learning and memory in the DS mouse. They are on the cusp of a major breakthrough. Check out the link to an article below from Scientific American for more information on their findings.

http://www.changingmindsfoundation.org/documents/newsletter.html

Thank You !

We appreciate all your support.

To Be or Not To Be......Accepted?

2010-09-10T06:59:00.000-07:00

Somehow Down syndrome got caught in 'acceptance'. The only goal seems to be that our children and adults with Down syndrome are accepted. Maybe the person with Down syndrome would like us to work on helping them function better. I know, my son loves it when he can remember easily. And it is to his advantage that he can do everyday things with ease.
For example, he can wear any pants he wants because he can button and zip. Without that ability, he would be forced to wear elastic waist pull up pants.
On that subject, he dresses himself everyday.
Neal can cut his own food. (including meat). How embarrassing ...... you are 13 years old and your mommy has to cut your meat.
His articulation and ability to talk is good enough that he can order his own meals at any restaurant. Wait, let me back up. He can read the menu and then order his own meal.
Neal can tell me what he did in school. Seems easy. But it wasn't for him.
Neal can tell time. Wow!
These may seem like little things but they add up to giving him independence, freedom and acceptance.

Prozac Anyone?

2010-09-09T08:28:00.000-07:00

Another study published June 2010 supports the use of Prozac in Down syndrome. Not only does it support the use of Prozac, it indicates Prozac should be started early, probably at birth. Maybe prenatally if you could.
The goal of the study was to see if early pharmacotherapy would improve neurogenesis and cognitive behavior. Guess what? It did.
Neurogenesis is literally what it sounds like. The birth of new neurons or nerves. It is now known that the ability to grow new nerves is a life long affair. At one time, it was believed that higher mammals (humans) did not have the ability to grow new neurons. It has come to light in the research world that we are not above new neurons. In fact, losing the ability to stimulate the growth of new neurons is what leads to depression and other neurodegenerative conditions.
Prozac has been on the market for 30 years. Over 55 million prescriptions have been written. If it had a terrible side effect, we would know. Stomach upset is the most common side effect. I get that from Mexican food.
I'm not making light of using drugs but my point is that weighing the options of degeneration versus regeneration, I'll take the regeneration, thank you.
The study looked at memory and learning in the Down syndrome mouse model. The DS mice did just as well as the typical mice in memory tests.

"These animals were tested for contextual fear conditioning, a hippocampus-dependent memory task, and exhibited a complete recovery of memory performance. Results show that early pharmacotherapy with a drug usable by humans can correct neurogenesis and behavioral impairment in a model for DS."

The abstract and full study is available online "Early Pharmacotherapy Restores Neurogenesis and Cognitive Performance in the Ts65Dn Mouse Model for Down Syndrome"
The thing we should be jumping up and down about is RESTORES COGNITIVE PERFORMANCE!!!!

Watch this video from Research Down Syndrome

2010-09-07T15:15:00.001-07:00

I found an amazing video advertisement for Down syndrome Research today through a google alert! Please take a minute or two to watch it, and then pass it on so others can see it too. It is about the research that has been done and is being done on memory and cognition and how it is leading to treatments and independent living for people with DS.
Check out Research Down Syndrome

Our Biggest Supporters Come In Small Packages

2010-09-02T15:32:00.000-07:00

The 'Spare Change for Changing Minds' campaign is catching on. Meet Ally, one of our best fundraisers. Her mother, Kari, works in my office and she brought a can home to help support Changing Minds. Ally took the initiative and went door to door in her neighborhood to collect money. She filled her can in no time! If you remember in an earlier blog, Reid had collected money for us too. It looks like the kiddos are CMF's strongest supporters !!!! Thank you Ally for being willing to ask your friends and neighbors for their "spare change". We are getting closer to our goal of funding more research into treatments for Down syndrome.

Cure Down Syndrome Now

2010-08-30T15:04:00.000-07:00

If I read one more time that Down syndrome can't be cured because it is a chromosome disorder, I will scream!!!!!!

Why did we get shoved into that box?

Rett syndrome is a chromosome disorder.

Go to the Rett syndrome website

"The core mission of the IRSF (International Rett Syndrome Foundation) is to fund research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services."

Fragile X is a chromosome disorder.

FRAXA is a nonprofit organization run by parents. Our mission: to find treatments and a cure for Fragile X by funding the most promising research. FRAXA has funded $18 million in research.

Prader-Willi syndrome is a chromosome disorder.

There logo is below:

AAAAaaaaaggghhhhh!!!!

Everyone gets a CURE but Down Syndrome!!!

We should at least try!!!!!!!!!!!

Cure Down Syndrome? (Part 3)

2010-08-28T04:48:00.000-07:00

Brain Problem 2:
Loss of neurons in the hippocampus (area of the brain where memories form):
Babies with Down syndrome lose 50% of their neuronal structure by 6 months of age. This seems like an insurmountable problem. In fetuses with Down syndrome, neurons fail to show normal dendritic development, yielding a “tree in winter” appearance. This developmental failure is thought to result in cognitive impairment.

Related Articles for Problem 2:
“Tree in winter” dendritic development
http://journals.lww.com/jneuropath/Abstract/2004/07000/Trisomy_21_and_the_Brain.1.aspx
2010 Prozac (Fluoxetine) Study
http://www.jneurosci.org/cgi/content/abstract/30/26/8769?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=fluoxetine+Renata+Bartesaghi&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT
2006 Prozac (Fluoxetine) Study
http://www.ncbi.nlm.nih.gov/sites/pubmed/16624293?ordinalpos=1
2010 Prozac (Fluoxetine) Study
http://www.ncbi.nlm.nih.gov/pubmed/20592198
Additional Information about Prozac
http://www.changingmindsfoundation.org/documents/prozac.html

Remedy for Brain Problem 2:
In 2006, the University of Maryland School of Medicine treated Down syndrome mice with Prozac (generic name Fluoxetine). They discovered that Prozac treatment doubled the neuron count resulting in a normal level after 24 days. This is like increasing the hardware on your computer. It allows you to run more complicated software. Prozac received FDA approval in 2003 for ages 6 years and older. It seems clinically logical that people with Down syndrome could benefit from this drug because of the loss of neurons that occurs early and on an ongoing basis. Additionally, many people with Down syndrome commonly exhibit symptoms of anxiety and OCD early in life and depression later in life. Prozac can be used to address these issues as well. Participants as young as 10 months old are using the Prozac component of the protocol. Many young participants have been using Prozac for nearly 2 years without negative side effects.

Brain Problem 3:
Early onset Alzheimer Disease/Inflammation:
How do you lower the inflammatory markers safely and for a lifetime in a syndrome that represents an Alzheimer model?
Related Articles for Problem 3:
Phosphatidyl Choline
http://www.changingmindsfoundation.org/documents/phosphatidyl_choline.html
Omega 3, 6, 9 Oil
http://www.changingmindsfoundation.org/documents/body_bio_balanced_oil.html
Minocycline and Ts65Dn
http://www.ncbi.nlm.nih.gov/pubmed/15468085?ordinalpos=1&itool=EntrezSystem2.PEntrezPubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
Inflammation Resolution and Lipids
http://www.ncbi.nlm.nih.gov/pubmed/19630766
Remedy for Brain Problem 3:
There is tremendous evidence that Alzheimer's disease is a state of chronic inflammation, specifically neuroinflammation. Inflammation is the body's natural response to injury or assault. It begins the healing process. There is a flip side to inflammation called resolution. Resolution is an 'active' process with specific chemicals that clears and limits the inflammatory response. A recent study from Harvard identified chemicals that reduce or control the magnitude of the inflammatory response. These chemicals are called Specialized Pro-resolving Mediators (SPM). These chemicals are derived from lipids, in other words, fatty acids – thus the importance of Body Bio Oil and Phosphatidyl Choline. You want your body to make these SPM's. SPM's include resolvins, protectins and maresins and are biosynthesized from essential omega-3 fatty acid precursors. The CMF's protocol aims to decrease inflammation by using fatty acids such as Phosphatidyl Choline (PC), Sunflower oil and Flaxseed oil. When used in the correct ratios they provide a safe, effective way to lower C-reactive protein, Interleukin 1 and Tumor Necrosis Factor which can contribute to inflammatory processes in the brain. Phosphatidyl Choline is a phospholipid that makes up 50%of the cell membrane. The membrane is the lining of every nerve cell that carries our signals. PC is a safe and essential fatty acid that studies have shown to protect the nerves from damage. Sunflower and Flaxseed oils are known for reducing inflammation by triggering a “restoration pathway.”
Brain Problem 4:
Norepinephrine is a neurotransmitter that nerve cells use to communicate. Norepinephrine has been found to be deficient in the brains of Down syndrome mice. Additionally, many children with Down syndrome have a lack of concentration and behavior problems (ADD/ADHD symptoms). According to an article by Dr. Joseph Carver, some studies suggest that children/adults (typical) with ADHD may have only
ten to twenty-five percent of Norepinephrine found in the normal brain.

Related Articles for Problem 4:
Focalin XR
http://www.changingmindsfoundation.org/documents/focalin_xr.html
Stanford – Norepinephrine
http://med.stanford.edu/ism/2009/november/down-syndrome.html
Methylphenidate and Norepinephrine study
http://www.ncbi.nlm.nih.gov/pubmed/20691429
ADHD and Norepinephrine, Dr. Joseph Carver
http://www.enotalone.com/article/4121.html
Remedy for Brain Problem 4:
The benefits realized from adding a mild stimulant medication such as Focalin XR is twofold. First, stimulant medications (ADHD drugs) have been shown to enhance attention and learning. Second, ADHD drugs work on the Norepinephrine system! This type of medication is very individualized. Focalin XR works well for many people with Down syndrome. However, some individuals may have better results using a different stimulant medication.
Thoughts From Teresa Cody
“Do we wait until every detail is known? Did you know that no one knew how aspirin worked until the early 1990's? The details of biological systems are understood more today than any time before but why not use the information in real time? All of the medications in the protocol have been through clinical trials. OK, not specifically for Down syndrome but NO medication has been through clinical trials specifically for Down syndrome. For example, have you ever given your child an antibiotic? We know their immune system can be described at least, as different, if not immunodeficient. But faced with pneumonia or strep throat, the logical decision is to treat with a medication the rest of the population uses. Scientific research has shown that these medications should help correct specific problems in the brain. Problems current science indicates are present in the brains of people with Down syndrome. Some protocol participants have been using the protocol for four years now. The clinical observation of the 300 children and adults on the CMF protocol is that there is an amazing improvement of function including: verbal abilities, long term memory, working memory, gross motor and fine motor. What part of this do you not want?”
Frequently Asked Questions
1.) Is the CMF protocol the solution to all brain problems associated with Down syndrome? No – but it is a start. It is something we can do now to improve cognition as demonstrated by current protocol users.
2.) Will the CMF protocol make my child learn as well as a typically developing child? No – but it does allow most participants to learn and comprehend better than before - now.
3.) Where can I find suggested dosing information? You can find a Dose Chart at http://www.changingmindsfoundation.org/documents/dose_chart.html
4.) How much does the CMF protocol cost? Ginkgo Biloba is widely available, over the counter. It is a standardized formula, so the quality is consistent from brand to brand. A quick internet search found a bottle of GB with 100 capsules for $12.99 from one company. Prozac, generic name Fluoxetine, is available by prescription only. You can get a 30 day supply at most pharmacies for about $4. The cost of prescription ADHD drugs vary – generic drugs are cheaper than name brand. The recommended Body Bio Oils are the
expensive part of the protocol: Phosphatidyl Choline – 100 softgels $62 or a 8 ounce bottle $94, Body Bio Balance Oil (Omega 3,6,9) – 180 softgels $30, 16 ounce bottle $26. Other brands of Phosphatidyl Choline and Sunflower/Flaxseed oils are widely available online and in health food stores.
5.) How do I find more information about starting the protocol? Read the links attached to this paper. They include a wealth of information and will answer many of your questions. You can also order the documentary film and see participants as they are followed while on the protocol (available at http://www.changingmindsfoundation.org/ ).
6.) How long does the protocol work? Do the kids plateau after being on it for a period of time? According to the CMF, the kids who have been on the protocol the longest are still advancing and learning new things all the time. Just like any medicine, the dosage of these medications have to be rebalanced with time and growth. Be sure to click on “Success Stories” on the CMF's web page for further information.
7.) How do I present this information to my doctor? You can take a copy of this article along with printed copies of the referenced articles linked throughout. Organize the information in a folder and leave it for your doctor to review. Schedule a follow up appointment to discuss after he/she has had time to read the information.
8.) More questions? Contact the Changing Minds Foundation at
changingmindsfoundation@gmail.com

Research Needs Funding –

You Can Help – NOW

We, as individuals, must take it upon ourselves to financially support cognitive research like that being done by Dr. Craig Garner at Stanford's Down Syndrome Research Center. If families do not find cognitive research in Down syndrome a worthy charitable cause, then who else will?
The Changing Minds Foundation currently has two opportunities for you to help fund research to improve cognition in people with Down syndrome. The first is a campaign called,
“Spare Change for Changing Minds.” You can read more about it and learn how to receive your cans for spare change on CMF's home page – click on 'We Can'
The second opportunity is to enter CMF's Ball Drop Contest. Purchase as many numbered golf balls as you want for $25 each. Every ball will give you a chance at a trip to Cabo San Lucas, Mexico!! On October 28th, at Wildcat Golf Club in Houston, all balls will be dropped from a helicopter hovering over the driving range. The first ball to land in the hole (or closest to the pin) wins the trip. The ball drop is limited to 2000 balls. Go to Golf Tournament and Ball Drop
Ask friends and family to support cognitive research by purchasing golf balls.
For Additional Information Please See the Following Websites
Changing Minds Foundation http://www.changingmindsfoundation.org/
Changing Minds Foundation's blog by Teresa Cody
http://www.changingmindsaboutdownsyndrome.blogspot.com/
Join Changing Minds Foundation on Facebook
http://www.facebook.com/pages/Changing-Minds-Foundation-Treatment-and-Research-for-Down-syndrome/101325513376?ref=ts
Join Changing Minds Foundation's NING site where parents discuss the protocol and their children
http://changingmindsfoundation.ning.com/main/authorization/signUp
Stanford's Down Syndrome Research Center
http://garnerlab.stanford.edu/
http://dsresearch.stanford.edu/research/
Join Stanford Down Syndrome Research on Facebook – keep updated with their blog
http://www.facebook.com/pages/Stanford-Down-Syndrome-Research-Center/378357949509?ref=ts

Cure Down Syndrome? (Part 2)

2010-08-27T05:50:00.000-07:00

By Christy Sanchez
National Down Syndrome Society's (NDSS) Position The following excerpt is taken directly from the National Down Syndrome Society's website:

“Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.”

The only difference between NDSS's position and that of Changing Minds Foundation is that the future is here and treatment to improve cognition is available now.

Changing Minds Foundation Holds 1st National Conference CMF held its 1st National Conference on July 23-24, 2010, in Houston, Texas. Attendees came from numerous states and as far away as Singapore. Thanks to a generous stipend provided by the Heart of Illinois Down Syndrome Association (HOIDSA), I was able to attend the conference. The following report is a summary of information gathered at the conference and information from the CMF's website and blog.

Neurobiology
The terms neurobiology and neuroscience can be used interchangeably. They refer to the biology or science of the nervous system. Researchers in the Department of Neuroscience at Stanford University are dedicated to developing theraputic strategies for normalizing cognition in people with Down syndrome Neurotransmitters regulate learning. In the brain of a person with Down syndrome these neurotransmitters are a little off or out of balance. They need a remedy to bring them back into balance. The good news is that we can treat this imbalance just like any other psychiatric disorder – with modern medicine. Just as life
expectancy has improved since 1983 with medical advancements, cognition can be improved with medical advancements - now!

What Problems are Addressed by the CMF Protocol?
The Changing Minds Foundation (CMF) has created a treatment protocol to address four of the neurological problems identified in Down syndrome. Most people with Down syndrome fall into the mild to moderat range of intellectual disability so even a small increase in cognitive ability (or IQ) can move an individual from being dependent on others throughout their lives to becoming independent members of society. The following is based on information taken from CMF's website and conference handbook.

Brain Problem 1: The major cause of cognitive impairment in mouse models of Down syndrome is over inhibition by the GABA receptor system. In 2003, Stanford University researchers discovered that the GABA receptor, an inhibitor, was continuously stimulated. Since the GABA receptor is an inhibitor of brain function, this stimulation actually causes a decrease in cognition. The nerves in the memory area of the brain are prevented from firing efficiently. Another way we can think about this is the use of alcohol or benzodiazepenes, (Valium and Versed). Both alcohol, Valium and Versed stimulate GABA receptors in the
brain. This results in slowed activity in the brain. Just as many of us have seen people's brains (and thus cognitive function) altered by alcohol or tranquilizers so too may the brain of one with Down syndrome be slowed by over-inhibition.
Related Articles for Problem 1:
Stanford, PTZ, & GABA
http://med.stanford.edu/news_releases/2007/february/down.html
Ginkgo Biloba & GABA
http://www.changingmindsfoundation.org/documents/ginkgobiloba.html

Remedy for Brain Problem 1: To get the proper level of GABA (so that learning can occur), a GABA antagonist was used to turn the inhibition down. Bilobalide, a component of Ginkgo Biloba extract, reversed the cognitive impairment in the mouse model. Stanford researchers are raising money to do a formal clinical trial with a GABA antagonist drug called PTZ, but it is not yet approved by the FDA - and this process will unfortunately take up to 10 years.
Ginkgo Biloba (also a GABA antagonist) is widely available in health food stores - now. Participants using the CMF protocol are realizing good results using Ginkgo Biloba. We now know that lack of memory is the lock on the door of learning for people with Down syndrome. Ginkgo Biloba is the key for opening the door of learning! Protocol participants as young as five weeks old are using Ginkgo Biloba.

Check in Tomorrow for Brain Problem # 2

Cure Down Syndrome? (Part 1)

2010-08-25T07:07:00.000-07:00

This essay was written by a mother with a young child with Down syndrome. She did such a terrific job I asked her if I could post it on my blog. Enjoy!

Cure Down Syndrome?

By Christy Sanchez

According to Webster's Online Dictionary, the definition of cure is to remedy; to remove; to heal. We have always been told that there is no “cure” for Down syndrome. That is – we’ve been told there is no remedy for Down syndrome. But is that really true? Is that really the case in 2010? According to the National Down Syndrome Society, in 1983, the average life expectancy of a person with Down syndrome was just 25 years old. Fast forward to now - the current life expectancy averages 56 years. What caused this change in life expectancy?
Did Down syndrome change in 27 years? Did the trisomy of chromosome 21 change between 1983 and 2010? Of course not - the genetics are exactly the same now as they
were then. A baby born in 2010 with Down syndrome has the same trisomy of chromosome 21 as the baby born in 1983. So what caused the increase in life expectancy? The answer is quite simple – advances in medicine. Not one parent or professional will argue this point. It is evident in the result – longer life expectancy.
Longer life expectancy is now achieved by addressing the physical problems associated with Down syndrome one by one. By identifying the issues that are more common in children with Down syndrome and screening patients – appropriate treatments are prescribed. These common problems have a remedy or cure. For example, an underactive thyroid has a remedy – medication. Celiac disease has a remedy – follow a gluten-free diet. Heart problems such as ASD and VSD have surgical remedies to treat them. People with Down syndrome still have the same triplicated chromosome 21, but there are now remedies for the physical problems associated with the overall syndrome. What do we know about what's different in their brains? Is there a remedy that can help now?
In the last 10 years an accurate mouse model (of Down syndrome), Ts65Dn, has been
developed. According to the NIH National Human Genome Research Institute, the Ts65Dn mouse mimics trisomy 21 (or Down syndrome) and exhibits many of the behavioral, learning, and physiological defects associated with the Down syndrome in humans, including mental deficits, small size, obesity, hydrocephalus and thymic defects. This model represents the latest and best improvement of Down syndrome models to facilitate research into the human condition. In the lab, researchers are now able to reveal answers or remedies for the neurological disorders associated with Down syndrome. Too often when we talk about a remedy or cure for problems in the brains of people with Down syndrome, parents and professionals alike say, “No, a cure is impossible. People with Down syndrome are the way they are – just accept it and move on!” Before you jump to that same conclusion, I encourage you to take a look at current science. Read it yourself. That is exactly what Teresa Cody did. Teresa is the mother of Neal, who has Down syndrome. At the age of 8, Neal couldn't read, write or distinguish shapes. “The main problem was he really couldn't remember. He did not ask questions. He could not verbalize,” said Teresa. “He used to pick up the pen and stare at the paper and you could see he had no idea which way to make the pen go to copy something.” Teresa studied the research. Based on Dr. Craig Garner's work at Stanford, she devised a protocol that contained compounds shown in Garner's research to target the underlying cause of learning and memory problems. Just one year later, Neal was reading at a second grade level and doing multiplication by hand. Neal's academic gains while taking the treatment protocol inspired Teresa to create the Changing Minds Foundation, a 501(c)3 non-profit organization, dedicated to improving the mental ability of persons with Down syndrome – now – with available medical treatments and proper education. A documentary film called 'Changing A Mind' tracked the progress of Neal and several other pilot protocol participants over the course of two years. You can view a trailer of the documentary on their website http://www.changingmindsfoundation.org/

IDEA

2010-08-23T05:15:00.000-07:00

I'm mad. I am so MAD! Can you believe there is still DISCRIMINATION against Down syndrome? Dulles Middle School, here in Texas thinks it is their decision whether a child is allowed in the classroom or not.
I have a friend with a child, Riley. He has Down syndrome. Dulles Middle school is kicking him out of the regular classroom. Riley has been in the regular classroom from kindergarten through 5th grade. Now all of a sudden, he doesn't belong.
For the past week, I read the law, IDEA (Individuals with Disabilities Education Act). It is very clear. The school by federal law must provide every child a 'free appropriate public education' in the least restrictive environment.
Riley has been on the CMF protocol (http://www.changingmindsfoundation.org/ ) for 5 years. So, in fact, he is capable of learning many things. In science, he learned all of the lab equipment and what it was used for. For example, he knows that a beaker is used to measure volume. But putting aside the fact that he can learn, it is completely against the law to automatically place him in a life skills classroom segregated from his peers just because he has Down syndrome.
The school is not backing down. They are determined to segregate him. This is blatent DISCRIMINATION!
Will you please help fight this injustice? Riley needs your help. Please write or call in protest:
Fort Bend ISD Administration Office can be reached by:

(281)634-1000
P.O. Box 1004
Sugar Land, TX 77487-1004
askFBISD@fortbendisd.com
Here is the web page for all the school board members in Fort Bend ISD
http://www.fortbend.k12.tx.us/board/meet.cfm
If you are reading this blog, you probably have a connection with Down syndrome in some way. If the school is allowed to do this to Riley, they can do it to anyone.

The Practice of Medicine

2010-08-18T05:10:00.000-07:00

Medicine is an art, as well as, a science. As a society, we have trapped ourselves into only treating after exhaustive measurements have been made. Much of good medicine comes from observation not measuring. There is a reason it is called, the 'practice' of medicine. That is because it does take practice and that practice is observing what works and doesn't work in real life.

It seems that the Down syndrome community has trapped itself into the 'measurement hole'. We seem to be stuck in a place that does not allow us to use logic and good practice to treat our population. Why are we doing this to ourselves?

Down syndrome is so far ahead of any other disorder as far as basic research goes but we are the farthest behind in the practical application of that information. The autistic community jumps at every little morsel of information. We are stuck in 'we must wait for every detail of every system before we act mode'.

Do you realize no one knows what causes Autism? The cause of Down syndrome has been known for 60 years and now that there is a mouse model scientists can look into the details of the brain function.

The clinical observation of the 300 children and adults on the CMF protocol is that there is an amazing improvement of function including: verbal abilities, long term memory, working memory, gross motor and fine motor. What part of this do you NOT want?

Does Down Syndrome have Obsessive Compulsive Disorder?

2010-08-17T14:50:00.000-07:00

As Neal's memory and learning ability have increased, my husband and I have noticed what I would call 'Obsessive Compulsive Disorder'.

Imagine that your mind got stuck
on a certain thought or action...
Then this thought or action got replayed
over and
over again
no matter what you did…
You don’t want these thoughts – it feels like an avalanche…
You don't want to line up your toys.....
Along with the thoughts come intense feelings of anxiety
and with the anxiety the thought or action is replayed over and over trying to reduce the anxiety!!

The above excerpt is from the Obsessive Compulsive Foundation: http://www.ocfoundation.org/
There was an essay written and delivered at an NDSS conference in 2005 which proves my point exactly. Dr. Dennis McGuire describes Down syndrome behavior in 'If the World was Ruled by Down syndrome'-
In the world of Down Syndrome, there would be a great deal more tolerance for:
■Repeating the same phrase or question
■Use of the terms “fun” and “cleaning” in the same sentence
■Closing doors or cabinets that are left ajar (even in someone else’s house)
■Arranging things until they are “Just so.”
All that he describes are OCD behaviors. Is this positive? I truly think he is trying to be positive toward Down syndrome, but I'm insulted. He has just described a disorder that everyone else gets treatment for and for DS it is 'cute'. Redirecting and behavior therapy have been helpful, but wouldn't it be wonderful to turn the OCD behavior off and with it the accompanying anxiety?
To read the entire essay by Dr. McGuire go to http://www.nads.org/pages_new/news/ruletheworld.html

Inflammation and Resolution

2010-08-16T04:30:00.000-07:00

The importance of fatty acids (Body Bio Oil) is the toughest part of the CMF protocol to explain. I've tried explaining it by describing the chemistry and eyes glaze over, but I'm going to try again.
I was searching a site called PubMed.gov yesterday and found new studies on inflammation and resolution. There is tremendous evidence that Alzheimer's disease is a state of chronic inflammation. Specifically neuroinflammation. Inflammation is the body's natural response to injury or assault. It begins the healing process. There is a flip side to inflammation called resolution. Resolution is an 'active' process with specific chemicals that clears and limits the inflammatory response.
A recent study from Harvard identified chemicals that reduce or control the magnitude of the inflammatory response. These chemicals are called Specialized Pro-resolving Mediators (SPM). These chemicals are derived from lipids, in other words, fatty acids. Aha....the importance of Body Bio Oil. You want your body to make these SPMs.
"SPMs include resolvins, protectins and maresins and are biosynthesized from essential omega-3 fatty acid precursors."

Brain Rules

2010-08-13T04:56:00.000-07:00

I was reading John Medina's book 'Brain Rules', and I found a very interesting description of development. At about 2 years old, there is an explosion of neural growth (in the brain) and then a process of pruning begins. Just like pruning the branches of a tree.

But that was not the most interesting part. There is a second explosion of brain growth and a second period of pruning. When does this occur you ask? Puberty!

There is a common, antecdotal knowledge that people with Down syndrome decline after puberty. Why?? Is it hormones? Is it pruning?

Wow? Do people w/ DS miss the explosion? and then just get the pruning. Could this be possible?

Dr. Medina also describes how verbal centers in the brain can look different and can be wired differently in different locations. Small, focused areas do better on verbal tests. Wide, spread out areas will perform poorly on verbal tests. I wonder what verbal centers look like in Down syndrome? I can guess.

ADHA, ADD, NE, Letters, letters and more letters

2010-08-12T03:14:00.000-07:00

Last November there were headlines that read, "A Fix for Down Syndrome Brains" and " Norepinephrine Boosts Memory in Down Syndrome Mouse Mode" and "Norepinephrine could Reverse Down syndrome".

This was and is fantastic. Looking at the study out of Stanford University, Salahi et al. found that increasing the neurotransmitter, norepinephrine (NE), increased contextual learning. They gave the DS mouse a drug called L-DOPS, which increases norepinephrine and epinephrine. This drug is used in kidney dialysis patients for hypotension. So, it increases blood pressure. What an interesting choice. One would not readily use that drug in children or adults with Down syndrome.

But there are a whole group of drugs that one would use in children and adults. They have been used for 50 years in thousands of children, and they also increase Norepinephrine. What kind of drugs could these be?

ADD/ADHD medications!

Ritalin was introduced in 1960. It was not known at that time how the drug worked, but it is now. It increases the levels of Norepinephrine! According to the Stanford study published November 2009, the Down syndrome mouse model benefitted from increased NE. So, maybe all children and adults with DS would benefit from ADHD meds? Not that they are all diagnosed ADD/ADHD, but this may be the next layer of the brain 'onion'.

F.Y.I. --- Other well known ADD/ADHD drugs are Concerta, Vivance, Focalin XR, Metadate, and Desoxyn

Timing Times Two

2010-08-11T07:51:00.000-07:00

At the first annual CMF conference we discussed Prozac. This seems to be the scariest drug for most parents. Today I wanted to discuss the timing of research, and Prozac is an excellent example.

In April of 2006 a study was published "Fluoxetine Rescues Deficient Neurogenesis in Hippocampus of the Ts65Dn Mouse Model for Down Syndrome". The study gave fluoxetine (which is generic Prozac) to the DS mouse and then examined the memory and learning area of the brain (which is called the hippocampus) 3 weeks later. Within 3 weeks, the brain had formed twice the number of nerves than before. Notice the title of the study, "...Rescues Deficient Neurogenesis...". This tells us that we know people with Down syndrome are naturally deficient at growing new neurons on their own, without some kind of help.

Back to timing. A second study, that looked at learning and memory in the Down syndrome mouse, concluded that after being treated with Prozac the mice had a "complete recovery of memory performance". Aren't these the kind of conclusions we want? Do you know when that study was published?

June of 2010

It took 4 years from one study to the next! Wow !!

Do we believe these studies and move forward and treat with a drug that has been on the market for 30 years, or do we wait 4 more years?

WE CAN

2010-08-08T04:21:00.000-07:00

At the First Annual CMF Conference, a fund raising campaign was rolled out....
'Spare Change for Changing Minds'

CMF received its first FULL CAN of coins yesterday, left on my doorstep! Here is a picture:

It is hard to read but the can weighs 4.8 pounds!!!!

Who is the mystery fundraiser? Meet Reid

His mom told me he filled the can in 3 days. Way to Go Reid!!

You raised $ 41.05!!!!!

Email at changingmindsfoundation@gmail.com and we will send you Spare Change Cans because WE CAN!

Why Do we Need More Research?

2010-08-07T03:41:00.000-07:00

Everyone cries, "We need more research in Down syndrome!" Not that I disagree but there is an enormous amount of push back and timidity to treat those with Down syndrome based on the research findings we already have.

Why do more research if you don't even believe what has already been discovered? In fact, Down syndrome is ahead of any other disorder even though we have the least funding. One woman made this happen. Her name is Muriel Davisson at Jackson laboratory in Bar harbor, Maine. She developed a mouse model of Down syndrome.

With a mouse, researchers are able to develop theories and then test those ideas directly on the DS mouse.

In the last 10 years, a few critical ideas have surfaced about how the DS brain works or doesn't work. These ideas have uncovered the mystery of how learning is so difficult for those with DS. But when I talk to physicians and parents, they are very unsure about treating these deficits. It made me wonder why spend time and money on research if you don't use it.

Do we wait until every detail is known? Did you know that no one knew how aspirin worked until the early 1990's? The details of biological systems are understood more today than any time before but why not use the information in real time?

Why do research and not apply it? None of the CMF protocol is dangerous. It is all logical with the information and research that we have at this moment. This is truly the 'practice' of medicine. As the research unfolds, we must move and change with it.

Do We Need Clinical Trials for Every Medication?

2010-08-06T03:08:00.000-07:00

You would be surprised how much resistance the CMF protocol gets, especially from the medical community but also parents. Texas Children's Hospital has a Down syndrome clinic. I met with the pediatrician in charge of the clinic and she told me she would have to have clinical trials. Really? All the medications in the protocol have been through clinical trials. OK, not specifically in Down syndrome but no medication has been through clinical trials specifically for Down syndrome. For example, have you ever given your child with Down syndrome an antibiotic? We know their immune system can be described at least as different, if not, immunodeficient. But faced with pneumonia or strep throat, the logical decision is to treat with a medication that the rest of the population uses.

Then, why do we refuse to treat other symptoms with medications that the rest of the population would be automatically prescribed? The symptoms that are in question happen to be psychological. All of a sudden, it is no longer considered possible to treat Down syndrome without specific clinical trials. We are not talking about dangerous drugs with severe, complicated side effects. We are talking about prozac which has been around for 30 years and given to over 60 million people. Can you believe that? 60 Million!!! That is incredible.

Prozac is recommended for anxiety, depression, obsessive compulsive disorder and eating disorders. Do any of these diagnoses fit? My observation says, yes! OCD is rampant. Anxiety is present. And there are many reports of depression in adolescence and the adult DS population.

How about the ADD/ADHD meds? How many in this population have good concentration and are not distractable? Children and adults all over America recieve treatment for attention problems.

What I see is that this smacks of discrimination. Yes, I said the big 'D' word. Down syndrome individuals are easily diagnosed by facial features and body type. Once that label is placed on the person with Down syndrome, the medical community feels there is no need to evaluate or treat any further. This is wrong!!

Scientific research has shown that these medications should help. What could it hurt to try? There are no dangerous side effects. Most patients report NO side effects. A physician who refuses to treat Down syndrome properly is discriminating because he/she can label the patient and move on. As parents and care takers we should demand better medical treatment and refuse to accept NO TREATMENT.

Half the Previous Blog Disappeared

2010-08-05T08:03:00.000-07:00

I know none of you have computer problems but they seem to be following me around. Half of the last blog has rudely disappeared. It is in cyberspace somewhere????
Anyway, as I was writing...... Neal did another round of AIT a few weeks ago. The therapy is listening to 'music', 30 minutes twice a day for 10 days in a row. Yes, it is a pain. You have to go to an certified AIT practitioner and listen on special equipment at their office. Neal's speech pathologist is certified and badgered me into doing it again this year.
Last year, we saw no outward changes. Maybe something improved in his brain but we couldn't see anything. This year is another story. He has been speaking in complete sentences but he immediately has added details and prepositional phrases. WOW!
I truly don't understand this therapy and I have learned that I don't need to know everything. It is much more productive if I stick with my strengths.

There is much more information on the official website: www.berardaitwebsite.com

Some Things You Do On Faith

2010-08-05T03:17:00.000-07:00

Some things you do because someone you trust recommends it. Last year, Neal did a therapy that I really can't explain and the research is sketchy. The therapy is called Auditory Integration Therapy (AIT) by Berard.

PANDA

2010-08-04T01:45:00.000-07:00

PANDA is not about a cute black and white bear. It stands for pediatric autoimmune neuropsychiatric disorders. I wanted to mention this at the July conference but we ran short on time. I couldn't stop the intelligent questions the participants had of the scientist from Stanford so I cut myself out. Just as an aside, my friend, Debbie, commented on how well informed the audience was.

PANDA is an idea or theory that some of the obsessive compulsive behaviors (OCD) could be caused by an out of whack immune response. Once Neal's ability to learn and remember improved, we observed much more OCD behavior. Actually, the OCD behavior was always present. It is just that as his function improved you could tell how deliberate the OCD behavior was.

My pediatrician suggested we look at the PANDA theory. Neal had a blood test for antibodies against 'group A beta-hemalytic streptococcus (GABHS). The results showed that he had a significant number of antibodies and he was placed on a month of antibiotics. The regimen included Amoxicillin (250mg 2 x daily) and Azithromycin (250mg 1 tablet/day Monday through Friday).

After one month, we have seen no improvement in Neal's behavior. The pedi wants to try a second month so we are about to start. I'll report back any changes.

Some examples of OCD behaviors include: pushing buttons, closing doors, cabinets, drawers, getting stuck on a thought or idea, pulling out hair, kleptomania, to name a few.

Press Release written by Patricia Almeida

2010-08-03T04:20:00.000-07:00

The Changing Minds Foundation (CMF) held its first Conference on July 23-24, in Houston, TX, to discuss available treatments for the different intellectual disabilities that affect persons with Down syndrome and to present the ongoing research at Stanford University Down Syndrome Center.
Various testimonies of families and professionals, who work with those using the Changing Minds Protocol, were presented, as well as, findings from researchers at Stanford University that investigate drugs to enhance memory and learning in individuals with Down syndrome by testing on the DS mouse model.
The Changing Minds Protocol was established by Teresa Cody DDS, the mother of a child with DS. Teresa worked with other mothers around the world via email and they researched the Internet to find an array of scientific studies. The studies using DS mouse models showed improvement in the mouse's ability to learn and remember. The protocol, that uses FDA approved medicines includes, B 12, Folic Acid, Ginkgo Biloba, Prozac (Fluoxetine), Phosphatidylcholine, Body Bio Balanced Oil and Focalin XR (or another ADHD medication).
Changing Minds Foundation estimates that around 200 families use the CMF protocol worldwide, or at least parts of it, and the large majority of these families have observed great advances in their child's development with no appreciable side effects. According to some presenters, some children have started the medicines as young as 3 months old and have been showing signs of development of a typical child. Pictures and videos of the treated children were shown to illustrate improvements.
Joanne Mothes, a teacher with 38 years of experience tutors 30 pupils with Down syndrome in Columbus Ohio. 14 of them are on the CMF protocol and 16 are not. She said that the difference between the two groups is remarkable. The title of her talk was 'Draw a line in the Sand'. According to Joanne, children that use the protocol are more attentive, more verbal, learn faster, and remember what they learn. She also said she noticed good results comparing the students to themselves, before and after starting the CMF protocol.
Research:
Scientists from Stanford University Down Syndrome Research Center, Craig Heller, PhD., Craig Garner, PhD, and Dan Wetmore, PhD talked about their research using PTZ (Pentylenetetrazol) and how that drug had similar effects to Ginkgo Biloba, which is currently being used in the CMF protocol. It acts on the GABA receptors of the cell, controlling the balance between excitation and inhibition, aiming to regulate these 2 stimuli, that are out of balance in mice and presumably individuals with Down syndrome. As the researchers described, too much inhibition can lead to retardation and even coma, while excess excitation can cause hyperactivity to seizures. Drs. Heller, Garner and Wetmore all affirmed that this research is advanced, but it will take time and funds to carry out clinical trials on PTZ. At this time, they estimate that it will take 10 years to get FDA approval.
The Stanford team, as well as, other participants of the conference, stressed the need for families to engage in fundraising and applying political pressure in order to implement more research. They also pointed out that it is crucial that the medical community, especially pediatric, psychiatric and neurological physicians be informed and get involved by working with patients that wish to use the treatments already available.
More information: http://www.changingmindsfoundation.org
http://dsresearch.stanford.edu

CMF Down Syndrome July Conference

2010-07-29T04:33:00.000-07:00

Wow!!! 'Talk about Success'!!!
The CMF Down Syndrome conference was held July 23 - 24 in Houston, Texas. The conference was held to discuss the latest treatments for improving Down syndrome learning and memory and to discuss the ongoing scientific research.
Sponsored by the Changing Minds Foundation, speakers included Joanne Mothes, cognitive therapist, Missy McDonald, speech pathologist, Debbie Elder, behavior specialist, as well as, Dr. Craig Garner, Dr. Craig Heller and Dr. Dan Wetmore of Stanford University Down Syndrome Research Center.
90 attendees came from all across the US and as far away as Singapore. "This is so exciting. This is the first time since Mac was born that we have real hope", said Lexy Austin, mother of 6 year old Maclain.
For more information on the CMF protocol and the latest research go to www.changingmindsfoundation.org

Sweet Success!

2010-05-12T07:54:00.000-07:00

Today I wanted to share some of the successes that I see with the Changing Minds protocol. I got an email the other day from the mom of 6 year old twins, one of whom has DS. She was sharing how his language skills had improved.

"Some of the things that amaze me are little bits and pieces of conversation - where he may be telling me about a favorite memory, or he will bring up something we taught him a few days ago. Or maybe he ends my sentence, showing he understands where I was going! Or it may just be his use of language - full complex sentences. An example of his sense of humor, language skills, and cognition all wrapped together:
We were getting breakfast before school, Sam (his twin) had already finished and was in the bathroom, brushing his teeth. I was trying to hurry Warren, and I said, "Come on you need to get your teeth brushed, just eat one more bite Sa..Warren!". Warren's head snapped towards me with a smile, he said clear as day, "You were going to call me Sam! I heard you say Sa! You got us mixed up, Mommy!". I said, "I know - you are right, I did mix you up." He said, "That's OK - it happens all the time." I asked, "It does? People call you Sam and Sam, Warren?". "Yes - they mix us up sometimes.", he laughed. (without prompting) He ate another bite of cereal, put his spoon in his bowl and handed it to me, saying "here you go". Then he did his usual, "Let's race - on your mark, get set, go! I'm going to win!"...and I just smiled as I jogged behind him!"

Most kids with DS don't speak in complete sentences like that! They don't use proper syntax. Warren's language skills are amazing, don't you think?

I saw Warren at this year's Butterfly Flutter By. I had a conversation with him and was completely amazed at his syntax and complete sentence structure. We were talking about the food and snacks that were there. Warren said "My mommy said I can only have one donut. It's junk food and it'll give me a tummy ache."

Balancing Brain Chemistry

2009-11-24T08:35:00.000-08:00

The idea that there is a cure for Down syndrome bothers some people. Over the weekend, I read a few blogs that say that we cannot remove the extra chromosome from every cell, therefore there cannot be a cure for Down syndrome. It is not about removing an extra chromosome -- our medicine doesn't do that for any medical problem. We treat the symptoms.

What the latest study from Stanford University showed is that 'balancing the brain chemistry', changed how the mice could perform. Treatment or cure for Down syndrome is all about balancing the brain chemistry. But if you think about it, balancing brain chemistry is exactly what psychiatric medicine has evolved into. At one time, you went to the doctor to talk about your problems. Now, you describe a symptom and you are given a prescription to balance the chemistry. It may take some trial and error to get it right, but researchers don't have a mouse model of you. That is where Down syndrome is lucky. They have a little mouse that can help explain what is going on inside their heads.

The other argument against treatment for Down syndrome is that there have not been clinical trials using these psychiatric agents. I would point out that there have not been clinical trials using any medicine commonly given to kids and adults with Down syndrome.

For example, we use antibiotics with Down syndrome and we know they have compromised immune systems. Would we demand a clinical trial before we gave our child Amoxicillin if they had an infection? No, we would just assume that the DS child is similar enough to the average child to safely use the antibiotic.

Have there been clinical trials on the reflux medicine that we give our Down syndrome children? No. Does that stop us from treating the reflux? No.

Have there been clinical trials on ibuprofen or Tylenol that we give our Down syndrome children? No. Does that stop us from giving those medications when they are needed? No.

I looked up clinical trials in Down syndrome and found a vitamin E study, Donepezil (an Alzheimer drug), antioxidant vitamin study, and some growth and thyroid hormone studies.

So, only when we move to try to treat the source of the difficulties is a clinical trial brought up. The source of the slow processing is the brain. The source of the low motor skills is the brain. The source of the low verbal skills is the brain. The source of the poor memory is the brain.

Dr. Craig Garner at Stanford University has been working on the cause of the poor memory in Down syndrome. We now know it is a little receptor called a GABA receptor. Without any treatment the receptor is stuck in the open position in Down syndrome. With some simple chemistry, the receptor can be rebalanced to open and close more normally. This simple chemistry balances the brain chemistry.

Dr. Salahi at Stanford found that the level of norepinephrine is low in subjects with Down syndrome. A common way to restore norepinephrine levels to a more normal level is ADHD medicine.

Dr. Mobley found that the transport system for Nerve Growth Factor was broken so the nerves did not get this necessary support. But when they added it to the nerves, they restarted as if they are lying dormant. To our benefit, a medicine as common as Prozac has been shown to increase another nerve factor chemical (BDNF). This is a fairly easy way to compensate for the brain chemistry imbalance.

Balancing brain chemistry is not new. Many of our friends and loved ones struggle with depression and other brain chemistry imbalances. We understand how they can be helped with the correct medicine. The situation in Down syndrome is the exact same thing; it is a matter of balancing brain chemistry to proper levels.

FANTASTIC! Another way to help Down syndrome

2009-11-21T04:39:00.000-08:00

Fantastic!!!! A study from Stanford University was released this week showing that when certain chemicals were increased to a more normal level in the brains of the Down Syndrome mouse, the mouse learned better. The idea that medicine can improve function is the entire theory behind the Changing Minds protocol.

They increased a chemical called norepinephrine which is a neurotransmittor. A neurotransmittor is a chemical that literally jumps across from the end of one nerve to the beginning of another nerve.

The study gave the Down syndrome mouse a drug called droxidopa which is an orally active norepinephrine precursor used for the treatment of orthostatic hypotension. Hypotension is abnormally low blood pressure.

Increasing norepinephrine is a known treatment for other situations. It is used in Attention-deficit/hyperactivity disorder, depression and hypotension. Norepinephrine cannot cross into the brain directly so medicines are used to increase it indirectly.

Increasing norepinephrine in the hippocampus (area of memory and learning in the brain) enhanced cognition in the Down syndrome mouse. So why not use a medicine that increases norepinephrine AND has been used in children for 50 years???? That medicine would be ADHD meds, such as Focalin, Concerta, etc. Why use a medicine that you would have to start from scratch with clinical trials?

We at Changing Minds Foundation have seen real improvement adding ADHD medication for our children with Down syndrome. What this study does, is back up with laboratory findings what we already have seen with the children on the Changing Minds protocol.

2009-11-16T12:16:00.000-08:00

Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

Who said this?

A few years ago, I named a website 'Cure Down syndrome' and was chastised for it. I literally got hate emails. How dare you say cure in connection with Down syndrome. There is nothing to cure, is what the emails argued.

I named it that on purpose, to see what would happen. Now, five years later, the big boys have it on their website. Granted it is all the way down at the bottom of the page, but it is written in black and white.

Have you guessed yet?

The truth is I'm very happy they are saying the word cure. The definition of cure is: Cure: 1. To heal, to make well, to restore to good health.

Who doesn't want good health?

There are definable problems with Down syndrome and to restore these problems to a more normal, healthy function is a good thing. For example, increasing the ability to learn is a good thing. The Changing Minds Foundation is dedicated to improving learning and memory through modern medicine. It is as simple as restoring functions in the brain to a more normal level. So, is it a cure?

The only problem with the word cure is that people seem to think it means to eliminate the problem in its entirety. So, a person with Down syndrome is only cured if the chromosome is completely removed from every cell. But this is not the true meaning at all. Cured means to restore to good health.

Someone is cured of cancer when the symptoms of cancer are gone, not when the cause of the cancer is eliminated. Many cancers, for example, are due to genetic causes. Hence, the question by the doctor about your family history. They don't ask because they are interested in genealogy. Your family history is important to your future health because of the genes you may carry.

So, who was it that made this statement?

Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

It was on the NDSS, the National Down Syndrome Society's website.

http://www.ndss.org/index.php?option=com_content&view=article&id=59&Itemid=76

The only difference between NDSS and CMF is we think the future is now. Thank you to all the dedicated research scientists for making the future NOW.

Benefits of Curcumin for Down syndrome

2009-11-11T04:25:00.000-08:00

I finally had a chance to research curcumin and I am delightfully surprised. It has some properties similar to prozac but it has even more. One research study I found looked at curcumin using what is called an 'unpredictable stress model'. This is when the researchers stress the mice in random, unpredictable ways. They have found this to be the most stressful on the mice. If stress is consistent and/or predictable, it is not as hard on the body or brain.

Curcumin did increase neurogenesis by increasing serotonin and BDNF (brain derived neurotrophic factor). But it did something more that I think may be the biggest help to Down syndrome.

Curcumin is an anti-inflammatory as well as an antioxidant, but that is not the most intriguing part of the research. Lots of herbs and vitamins are anti-inflammatory or have antioxidant properties.

The most intriguing part is the idea that curcumin is structurally capable of binding to amyloid plaques and breaking up the aggregation of them. Curcumin literally sticks itself to the junk (amyloid plaque) and breaks up the group of them stuck together.

This group of junk clogs up the brain and stops it from working.

Down syndrome has a triplicate copy of the APP gene. Amyloid precursor protein gene. This is the gene associated with Alzheimer's disease. In Alzheimer's disease, brain researchers find the brains full of plaques and tangles. The plaques are called amyloid plaques.

Now, the big drawback I see to curcumin is getting it into the brain. It doesn't cross the BBB (blood brain barrier) easily. But, one brand, Longvida Curcumin, came up with an intriguing solution. They combined curcumin with lecithin. What does that do, you ask? Well, lecithin is phosphatidyl choline, a fat that will cross the BBB. Brilliant!!!

I think curcumin is a fantastic addition for the health of the Down syndrome brain (and probably everyone would benefit).

Nicole's success

2009-06-17T04:25:00.000-07:00

'The Comforter' 20"x 30" Acrylic on Paper

In the documentary, 'Changing A Mind', it follows a young lady with Down syndrome from the depths of unresponsiveness and total internalization to healing and recovery. Nicole is a hero. I am so proud of her progress.

On June 28th, she will have her first showing at an Art Gallery in Houston, Texas. Please join us.

Way to go, Nicole!!!

DARKE gallery presents NICOLE TAYLOR WORKS ON PAPER ARTIST

Sunday June 28 3-6 PM DARKE gallery 5321 Feagan @ DeteringHouston, TX 77007

DARKE gallery is pleased to present works on paper by Houston artist Nicole Taylor.Nicole is a 27 year old African American painter with Down Syndrome who discovered her love of painting while she attended Darla's School for Adults with Disabilities. She is an active member of the ARC of Fort Bend, the Down Syndrome Association, the Changing Mind Foundation and the Wheeler Baptist Church.Refreshments will be served!

DARKE gallery5321 Feagan @ DeteringHouston, TX 77007713-542-3802email: darkegallery@aol.com http://www.darkegallery.com/

Brain Rules - The Numbers Shall Set You Free

2009-06-04T05:38:00.000-07:00

I was reading a book called Brain Rules by John Medina and came across some very interesting information. (BTW, I would recommend the book). It seems that babies are born with the same number of neurons and connections as adults have. And then, by the time they are 3 years old, the connections (and therefore number of neurons) have doubled or even tripled. But that doesn't last long. The brain as he puts it 'takes thousands of tiny pruning shears and trims back a lot of this hard work.'
What is remarkable is that at puberty the whole process starts over again. So, the brain explodes with neuron growth and then with vigorously trims it back again. So there is a lot of brain growth and pruning during the terrible twos and then again the the terrible teens.

"Though that might seem like cellular soldiers obeying growth commands in lockstep formation, nothing approaching military precision is observed in the messy world of brain development. ...Even a cursory inspection of the data reveals remarkable variation in growth patterns from one person to the next."

As I was reading this, I was thinking about all the stories of DS kids that decline after puberty. What if DS never get (or get much less) of that explosive neuron growth but have close to normal pruning? This would cause the neuron count to dip below that critical number that keeps coming up.
Elizabeth Goulds work showed that below a certain neuron count, the study subjects get anxiety, and depression. And the brain goes into a 'safe mode' and doesn't initiate the normal neurogenesis that should be happening. The brain some how panics and just tries to hold onto what it has.
Numbers.....could it be a numbers game?

Inspiration

2009-06-03T09:43:00.000-07:00

I have been scouring the bloggers lately and love the sites I have been reading. It has inspired me to write a bit everyday.
My husband and I have 2 children, Erin 15 and Neal 11. Neal has Down syndrome which I took on as my cause. I had this crazy idea since the day he was born that through the proper medicine (chemistry) we could treat the symptoms and free him from the limitations of Down syndrome. It is now coming true. He is getting better and better. He has more and more function and abilities.
My goal is to see both my children walk out as well-educated, highly motivated adults. What do you want to see walking out of the house at 18?