Be Part of the Breakthrough for Down Syndrome Research

May 7, 2009 Kyron 1 Comment

This article was submitted to me and unfortunately I have been sidetracked. That seems to happen alot these days. Life has a way of doing that to so many of us.  While this article talks specifically about Down Syndrome research, there is room to be concerned about funding for many issues regarding special needs children. Hopefully this will get all of us thinking about reaching out and speaking out about prioritizing spending in Washington so those who cannot speak for themselves.

I recently went to a talk by Dr. William Mobley, a Stanford Down syndrome researcher, and became aware of the recent breakthroughs in Down syndrome research that could lead to treatments to improve cognition, memory, speech and learning and reduce the effects of Alzheimer’s disease. I was very excited about the research, but was saddened to learn about the reduction in funds that the federal government is putting towards this research. In 2004, the National Institutes of Health (NIH) funded $23 million in Down syndrome research, whereas by 2008, NIH funding had decreased to $17 million, a decrease of more than 25%. The $17 million in NIH funding for Down syndrome research in 2008 translated to approximately $42 per person with Down syndrome. Other conditions receive significantly more. See www.dsrtf.org — The Down Syndrome Research and Treatment Foundation (DSRTF) — for more information about Down syndrome research and to sign up (lower right-hand corner) to receive newsletters and keep up with new research developments and breakthroughs.

Having been amazed at how close Dr. Mobley is to turning his research into a potential treatment for our loved ones (he’s found 2 drugs that work in mouse models of Down syndrome – one that improves cognition and one that reduces the effects of Alzheimer’s), I wanted to do all I could to move his and others’ research forward. Dr. Mobley said we could do 2 things to help. One is to donate to DSRTF (www.dsrtf.org), which is where he gets much of his funding, with more than $3 million in DSRTF research funding given to Stanford since 2004. The other is to write to our Congress people to ask them to join the Down Syndrome Caucus and to fund Down syndrome research at a higher level. Since then, I’ve done both. Here’s a generic form of the letter I wrote to my Congress people that my friends sent to their Congress people. Please feel free to use any or all of this letter to write to your Congress people and add a personal touch by talking about your loved one with Down syndrome. Go to votesmart.org and type in your zip code to find them. If you click on their name, you can find a link to their web mail address, click on it, and then cut and paste your letter into the form. You can also write directly to President Obama by going to the following website: www.whitehouse.gov/contact.

If we all work together, we can be part of the breakthrough.

<date>

Your name

Your address line 1

Your address line 2

Senator Dianne Feinstein

331 Hart Senate Office Building
Washington, DC 20510

Dear Senator Feinstein,

As the <parents/aunt/uncle/friend> of a child with Down syndrome, we respectfully ask that the government fund Down syndrome research at a higher level. Due to recent breakthroughs in genetics and Down syndrome research at facilities such as Stanford University, a treatment appears imminent. If individuals with Down syndrome can live more independent lives, the government could save much of the 6 billion dollars spent annually for people with Down syndrome, and these people could become tax-paying citizens. The long-term benefit to our society is huge. The initial, up-front cost of the research could, in the end, save taxpayer dollars.

My name is <name> and I am the <mother/father/aunt/uncle/friend> of < person’s name>, < info about the person – for ex., a sweet, playful, happy 2-year-old boy with Down syndrome.> <mention specifics about the person – for ex., His older brother and sister are so proud of him whenever he accomplishes something that comes naturally to others. They cheered him when he signed his first word, learned to crawl and took his first steps. We are all better people for having him in our lives.>

However, <my husband and I> worry about what his future will be like. Will he be able to live independently, or, will he need to live on government aid all of his life? We’re learning about new research developments in the field of Down syndrome and are very hopeful that a treatment will become available to our son within his lifetime. <My husband and I> thank you for the opportunity that early education programs and mainstreaming has given and will continue to give to our son. If the new research developments can be turned into drug treatments, and his cognition improves by a mere 10-20% beyond what it would have been, he could support himself financially when he grows up and he won’t need to live on government assistance as an adult.

People with Down syndrome are living longer lives, many into their 60s and 70s, but nearly all will develop Alzheimer like symptoms by the time they are in their 40s. A link has been made between a gene associated with Down syndrome cognitive issues and the cognitive issues associated with Alzheimer’s disease. The research being developed for Down syndrome has the potential to delay the onset of Alzheimer’s, not only in people with Down syndrome, but in the general population as well.

According to Stanford Down syndrome researcher, Dr. William Mobley, “brain function can be modified, in both children and adults, and we are learning how such changes occur. Therefore, today, we can boldly predict that Down syndrome is not too complex to understand, it is not too difficult to treat, and it is not too late to treat.” Dr. Mobley is testing a couple of new drugs on mice. These drugs sound very promising, but he needs funds so he can turn his research into treatments for people with Down syndrome and other cognitive disabilities as well as people with Alzheimer’s.

I think Dr. Mobley said it best when he said, “During times of tight budgets, it may be tempting to de-emphasize research. And yet, research – particularly medical research – is the best investment we can make in health care for our country. If we are concerned about cutting future health care costs, we must look for ways to prevent those costs from occurring.”

Please help by joining the Congressional Down Syndrome Caucus and funding the research.

Sincerely,

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  4. Glasses for Children with Down Syndrome
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Currently there is "1 comment" on this Article:

  1. robin raphael says:

    respected sir,
    the influence & powers of american senators are well known. as such, i fervently hope that influential gentlemen like you will not rest in peace till your effort in mobilising funds sufficiently enough for seeing the path breaking efforts of the like of dr mobley are manifested in the form of god’s blessing of real treatment for down syndrome, autism etc; which will raise millions & millions of lives into the fullness of life from the heartbreakingly cruel shackles of these crushing disorders.

    father of a 6 year old beloved.

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