Archive for March 22nd, 2018

Global Down Syndrome Foundation Applauds Congressional Champions and Looks Forward to Partnering with the Trans-NIH Down Syndrome Initiative

DENVER – Thursday, March 22, 2018 – The Global Down Syndrome Foundation applauds Congress for including funding for a new trans-National Institutes of Health (NIH) initiative to study Down syndrome in the final Fiscal Year 2018 Omnibus Appropriations legislation that is expected to pass this week. The provision, supported by the Global Down Syndrome Foundation, directs the NIH Director to lead a groundbreaking new scientific initiative to study immune system dysregulation and trisomy 21, with the aim of yielding research discoveries to improve the health of individuals with Down syndrome and typical individuals at risk for Alzheimer’s disease, cancer, cardiovascular disease, and autism, among others.

“Today’s action marks a significant advance in our efforts to improve the lives of individuals with Down syndrome as well as millions of other Americans,” said Michelle Sie Whitten, President, CEO, and Co-Founder of the Global Down Syndrome Foundation (Global). “We applaud our bipartisan allies in Congress especially the leadership of Appropriations Subcommittee Chairs Tom Cole (R-OK) and Senator Roy Blunt (R-MO) and Ranking Members Representative Rosa DeLauro (D-CT) and Senator Patty Murray (D-WA) as well as Representatives Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX), Mike Coffman (R-CO) and Cheri Bustos (D-IL).”

Last year, the Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, which provides federal funding for the NIH, held the first ever hearing on current and future research funding priorities for people with Down syndrome. The Subcommittee heard testimony from experts including Whitten, her colleague Dr. Joaquín M. Espinosa, Executive Director of the Linda Crnic Institute for Down Syndrome on the Anschutz Medical Campus, and Frank Stephens, a Global Quincy Jones Award Recipient and Advocate.

People who have three copies of chromosome 21 (instead of two) have Down syndrome, also known as trisomy 21. The additional copy of this small human chromosome leads to a radically different disease spectrum for people with Down syndrome whereby they are predisposed to or protected from major diseases that are the cause of death for over of 50% of Americans. For example, people with Down syndrome face an extraordinarily high prevalence of Alzheimer’s disease and a high prevalence of autoimmune disease and childhood leukemia. Conversely, they are protected against heart attack and solid cancers such as breast cancer or prostate cancer.

Recent, scientific research funded by Global and led by Dr. Espinosa, called the Crnic Institute Human TrisomeTM project, has led to a transformative discovery. Specifically, Dr. Espinosa’s lab found a continuous dysregulation of the immune system in all people with Down syndrome which may explain much of the different disease spectrum observed in this population. The new trans-NIH initiative – which will include the National Cancer Institute, the National Institute on Aging, and the National Institute for Child Health and Human Development – will help accelerate efforts to quickly build upon these findings and fuel new therapeutic discoveries that will improve the health of people with Down syndrome and millions of others.

Global is thrilled to know that its decade-long campaign to educate our government and invest in science has helped lead to this new development. Global looks forward to being a resource and working with the NIH as this initiative takes shape. This represents an amazing milestone for federal research on Down syndrome and our members and advocates join us in thanking Congress for making this a reality.

###

About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation is at the forefront of research, medical care, education and advocacy dedicated to significantly improving the lives of people with Down syndrome. Supporting the research of hundreds of scientists around the world, and through our advocates, partners and affiliates including the Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome, Global is making an impact on the lives of people with Down syndrome today, and remains focused on finding solutions tomorrow. We are committed to helping people with Down syndrome realize their fullest potential and to lead healthy and productive lives. To learn more, visit. www.globaldownsyndrome.org.

Global is so grateful to First Lady Valerie Sununu of New Hampshire and First Lady Robin Hickenlooper of Colorado for chairing the Light the Way Campaign, an initiative started in 2011 by First Lady Mary Pat Christie of New Jersey to shine a light on the groundbreaking advances being made to empower individuals with Down syndrome! We are honored to have partnered with First lady Sununu and First Lady Hickenlooper to highlight Global’s initiatives that are making a difference for people with Down syndrome throughout the country.

On the evening of Wednesday, March 21st as part of the Light the Way campaign, New Hampshire and Colorado lit the Governor’s Residences in blue in recognition of Down syndrome research. This date has particular significance as Down syndrome results from the presence of three copies of chromosome 21. Below are all the participating states from 2018!

Colorado
New Hampshire
New Jersey
North Carolina
Oklahoma
Virginia
Wyoming
Minnesota
New Mexico
Ohio
Tennessee
Texas
West Virginia
Arkansas
Indiana
Pennsylvania
Illinois
Kansas
Maryland
Wisconsin
Montana
Puerto Rico