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Funding Down’s syndrome research

Posted in Educational research, Learning disability by Matt at WelcometoIllinois on October 27, 2008

Yesterday I mentioned a study to compare two early literacy intervention approaches to educating young children with Down syndrome initiated by The Rocky Mountain Down Syndrome Educational Fund.

That fund was created in 2006 with a $500,000 matching grant provided by the Anna and John J. Sie Foundation, which has just announced a campaign to increase public and private research aimed at eradicating the ill effects of Down’s syndrome and committed $34m to create an institute to fulfill that goal.

According to that announcement:

“The Anna and John J. Sie Foundation is a catalyst for improving the lives of people with Down syndrome. The foundation is one of the leaders in funding programs and organizations that are dedicated to research, education, clinical care and advocacy for people with Down syndrome.

In a little more than two years, the Foundation has committed more than $36 million in grants and endowments, including funding for the Linda Crnic Institute for Down Syndrome that will fully integrate the highest-quality basic, translational and clinical research, clinical trials, therapeutic development, medical care, education and advocacy.”

It adds:

“The total budget for the National Institutes of Health (NIH) was $28.5 billion for FY 2008, but only $13 million was allocated for Down syndrome, the lowest amount for any of the conditions that NIH is targeting. Moreover, much of the public and private research appears to be focused on improving prenatal testing, not on researching the disorder.”

I can’t find a website for the Anna and John J. Sie Foundation and I don’t have time today to do a lot of research so I don’t know who they are but they certainly seem to be taking a lead in funding Down’s syndrome research and treatment.

According to this report on 9news.com:

“Anna and John J. Sie have high hopes for their granddaughter Sophia, born five years ago with Down Syndrome. Their family is determined to significantly enhance the lives of all people with Down Syndrome…

The Linda Crnic Institute for Down Syndrome is named in honor of the University of Colorado Denver School of Medicine professor of pediatrics and psychiatry who died in a bicycle accident in 2004. Linda became a friend and mentor of Michelle and Tom Whitten when they received the prenatal diagnosis that Sophia would have Down syndrome. Linda has inspired the Whittens and the Sies to establish this global institute for Down syndrome that will provide the highest quality of basic, clinical and translational research trials, therapeutic development, medical care, education and advocacy.”


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