DENVER--(BUSINESS WIRE)--After years of advocacy, the Global Down Syndrome Foundation, its research affiliate, the Linda Crnic Institute for Down Syndrome, and its nationwide network of dedicated members and self-advocates, are celebrating House Labor and Health and Human Services Appropriations Subcommittee Chairman Tom Cole’s (R-OK) announcement of a historic and significant 65% increase of Down syndrome research funding at the National Institutes of Health (NIH) from $35 million in FY2017 to $58 million in FY2018.
“Global, the Crnic Institute, and our amazing community have worked tirelessly to grow support in Congress to address two decades of decreased and flat funding for Down syndrome research at the NIH,” said Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation. “Having the increase announced at our inaugural AcceptAbility Gala was like a life’s worth of work coming to fruition. We are deeply grateful to our heroes in this regard – Representatives Tom Cole, Rosa DeLauro, Cathy McMorris Rodgers, Pete Sessions, Nita Lowey, Cheri Bustos, Mike Coffman, Senator Roy Blunt, and countless others who regardless of political affiliation, support a brighter future for our children and adults with Down syndrome.”
The historic increase for Down syndrome research funding at the NIH was announced by House Appropriations Labor, Health and Human Services, Education and Related Agencies Subcommittee Chairman Tom Cole (R‐OK) when he received Global’s Quincy Jones Exceptional Advocacy Award at the recent AcceptAbility Gala in Washington D.C.
“The pipeline of science and medical care that the Global Down Syndrome Foundation has established is admirable and worthy of some introspection regarding past funding levels,” said Congressman Cole. “Dr. Francis Collins, the director of NIH, agrees. To his credit, they have already begun the trans-NIH Down syndrome research initiative to address this incredibly challenging, but incredibly promising science.” Congressman Cole received a standing ovation when he stated, “This year, 2018, we will increase funding by 65 percent. We will move up from 35 to 58 million dollars.”
Ranking Member Rosa DeLauro (D-CT) also received Global’s Quincy Jones Exceptional Advocacy Award at the AcceptAbility Gala and was pleased to share that a bipartisan Congress was working on behalf of the Down syndrome community.
“While Down syndrome is one of the most common chromosomal disorders, NIH funding for Down syndrome research remains low,” said Congresswoman DeLauro in her acceptance speech. “We can and must do better! That’s why I am proud we have provided $3 billion more to the NIH than last year, and to join the fight along with Tom Cole for funding for Down syndrome funding at the NIH.”
Congresswoman DeLauro recognized Whitten’s leadership resulting in Global’s enormous impact on individuals with Down syndrome.
Both Representatives Cole and DeLauro mentioned the October 2017 Labor HHS Subcommittee first-ever congressional hearing on Down syndrome research. Whitten and Global’s spokesperson and self-advocate Frank Stephens testified at the landmark hearing that garnered unanimous bi-partisan support and follow-on report language for increased Down syndrome research funding in the 2018 omnibus budget. Stephens’ testimony on C-SPAN went viral and received over 160 million views.
Dr. Joaquín Espinosa, executive director of the Linda Crnic Institute for Down Syndrome, also testified at the hearing and presented his findings from the institute’s groundbreaking research, the Crnic Institute Human Trisome ProjectTM, that recasts Down syndrome as an immune system disorder.
Dr. Espinosa was elated by the news of increased NIH funding for Down syndrome research. “This is a game-changer for so many scientists eager to help people with Down syndrome and fascinated by the compelling science,” said Espinosa. “By understanding trisomy 21, we stand to improve the lives of millions of people with Down syndrome and hundreds of millions more with Alzheimer’s disease, cancer, and autoimmune disorders. We are deeply grateful to Congress and the leadership at NIH.”
Other dignitaries attending Global’s AcceptAbility Gala were Representatives Ron Estes (R-KS), Sheila Jackson Lee (D-TX), Hank Johnson Jr (D-CA), and Jared Huffman (R-CA). Key sponsors included PhrRMA, American Express, Amgen and Genentech and guests enjoyed special performances by Global Ambassador DeOndra Dixon, Robert Wallop, the RhythmXpress dance troupe and The Voice winner and Grammy nominee, Cassadee Pope.
Despite being the most frequent cause of developmental delay in the U.S. and the world, Down syndrome has been one of the least funded genetic conditions by the NIH for the last two decades. The Global Down Syndrome Foundation and its affiliate, the Crnic Institute for Down Syndrome, through private sector philanthropic support, has invested over $40 million in research and medical care benefiting people with Down syndrome.
