Frank Stevens in DC at Hearing

GLOBAL Applauds House Appropriations Subcommittee for Approving $15 Million Increase for NIH INCLUDE Initiative and Related Down Syndrome Research as Part of FY2022 Budget

For Immediate Release:
Anca Elena Call | acall@globaldownsyndrome.org | C: (720) 320-3832

DENVER, CO – (July 13, 2021) Today, the House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies (Labor-HHS) approved their fiscal year 2022 funding bill which includes a $15 million funding increase for the National Institutes of Health’s Investigating Co-Occurring Conditions Across the Lifespan to Understand Down Syndrome (INCLUDE) initiative and related Down syndrome research.

Global Down Syndrome Foundation (GLOBAL) and our nationwide network of community advocates 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.

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. The full House Appropriations Committee are planning to vote on the funding legislation this Thursday, July 15th, and it is likely to be considered by the House of Representatives by the end of July.

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, run out of the Office of the NIH Director with support from NIH Champions Drs. Francis Collins, Lawrence Tabak, Diana Bianchi, Gary Gibbons, and other institute directors such as Dr. Richard Hodes. The initiative has 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. Increased funding will help researchers pursue some of the most neglected areas of research and care such as health disparities for African Americans with Down syndrome, mosaic Down syndrome, those with the dual diagnosis of Down syndrome and autism, and new studies on metabolic research dysregulation.

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 28 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 medical care. GLOBAL has a membership of over 130 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 Down Syndrome WorldTM magazine. GLOBAL also organizes the annual AcceptAbility Gala, and 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).

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