DENVER, CO, March 16, 2022 (GLOBE NEWSWIRE) -- This week, on March 15, 2022, President Biden signed into law the $1.5 trillion fiscal year 2022 omnibus federal spending bill which includes a $10 million increase in Down syndrome research funding at the National Institutes of Health (NIH) above last fiscal year’s funding level. The bill was passed by the U.S. House of Representatives and Senate the week before. Total funding for FY22 is approximately $115 million.
This significant increase in funding for Down syndrome research will specifically benefit the NIH’s Investigating Co-Occurring Conditions Across the Lifespan to Understand Down Syndrome (INCLUDE) Initiative, which is led by the NIH Office of the Director and was launched with help from Global Down Syndrome Foundation.
Global Down Syndrome Foundation (GLOBAL) and our nationwide network of self-advocates and family members successfully advocated for the establishment of a trans-NIH Down syndrome research initiative in the fiscal year 2018 budget and have secured funding increases for the initiative in each year since its establishment.
The new funding provided by the spending law also includes a Congressional request that the NIH make new investments in addressing racial and health disparities for African Americans with Down syndrome, mosaic Down syndrome, the dual diagnosis of autism and Down syndrome, and metabolic dysregulation.
GLOBAL is deeply grateful for the support and leadership of House Appropriations Committee Chair Rosa DeLauro (D-CT), Labor-HHS Subcommittee ranking member Tom Cole (R-OK), Rep. Lucille Roybal-Allard (D-CA), Rep. Jaime Herrera Beutler (R-WA), Assistant Speaker Katherine Clark (D-MA), Rep. Cheri Bustos (D-IL) and all the members of the committee who supported this year’s increase.
GLOBAL has led a multi-year, international advocacy campaign to build awareness among policymakers regarding unparalleled scientific opportunities related to the presence of three copies of chromosome 21 (instead of two), which causes Down syndrome. This leads to a radically different disease spectrum for people with Down syndrome, as these individuals are predisposed to or protected from major diseases that are the cause of death for over of 50% of Americans.
Thanks to GLOBAL’s leadership, a bipartisan, bicameral group in Congress included language in the fiscal year 2018 spending bill that asked the National Institutes of Health to launch a trans-NIH program led by the Office of the NIH Director to harness the power of multiple institutes to expand the science around Down syndrome and co-occurring conditions like cancer, diabetes, and Alzheimer’s disease.
The INCLUDE Initiative has been a resounding success, led by the Office of the NIH Director with support from NIH leaders Drs. Francis Collins, Lawrence Tabak, Diana Bianchi, Gary Gibbons, and other institute directors such as Dr. Richard Hodes. The initiative has already led to breakthrough and significant advances in our understanding of immune system dysregulation, new studies focused on the increased prevalence of Alzheimer’s disease among individuals with Down syndrome, and the creation of national Down syndrome Data Coordinating Center, all of which will dramatically improve the health and quality of life of individuals with Down syndrome as well as millions of individuals who do not have Down syndrome.
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About Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 120 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.
GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).
Attachments
- Frank Stephens at Congressional Hearing with Global Down Syndrome Foundation
- Increased Funding Will Help Researchers Pursue Some of the Most Neglected Areas of Research and Care
