PETITION REQUEST:

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!

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]

Another Study Showing Improved Mental Abilities in Down Syndrome

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]

Validation for Treatment of the Mental Challenges in Down Syndrome

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.

Watch this video from Research Down Syndrome

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

Cure Down Syndrome? (Part 2)

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

The Practice of Medicine

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?

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.