Historic ~65% increase for NIH Down syndrome research

Categories: News, Other

Marlborough MA, May 27, 2017 — On Thursday this week, Congress’ House Labor and Health and Human Services Appropriations Subcommittee Chairman Tom Cole’s (R-OK) announced a historic and major increase to Down syndrome research funding at the National Institutes of Health (NIH) from $35 million in FY2017 to ~$58 million in FY2018. We are deeply grateful to Congress to have recognized the importance of Down syndrome research.

We celebrate the passion and dedicated efforts of the many self-advocates, families, researchers, and Down syndrome organizations throughout the country that have enabled this outcome. LuMind Research Down Syndrome Foundation (LuMind RDS) applauds the Global Down Syndrome Foundation, and their CEO Michelle Sie Whitten, for their leading role in advocacy for this extremely important development. We also thank the National Down Syndrome Society, and their CEO Sara Weir, for advocating for those with Down syndrome and their families and leading Down syndrome researchers. LuMind RDS has been a contributor to these efforts and will continue to advocate for people with Down syndrome and for the research agenda that is needed to care for them.

“The increase in NIH funding is evidence that Congress recognizes the importance of research in Down syndrome and that these funds will be innovatively and productively used by Down syndrome research teams. It also speaks to the great impact that comes from the Down syndrome community coming together to advocate for funding for Down syndrome research.” said Hampus Hillerstrom, President and CEO of LuMind RDS. “This additional NIH funding comes at a time where the status of research has never been more promising: the efforts of hundreds of researchers over the last decades, many supported by LuMind RDS, are increasingly sophisticated and are uncovering promising therapeutic targets. Also, based on the overall progress of science, there are now many novel and exciting research advances that can be applied to Down syndrome, including late-stage Alzheimer’s drug candidates, gene therapies, digital medicines and genetic and other techniques that can lead to a better understanding of the underlying conditions in Down syndrome.”

As the Down syndrome community celebrates, we commit to continue to robustly advocate for the ongoing need for research funding. LuMind RDS encourages families to get informed and rally behind research for those with Down syndrome. Please visit our website to learn more: www.LuMindRDS.org/research-strategy and if you wish to get involved contact us at JoinOurMission@lumindrds.org

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About LuMind Research Down Syndrome Foundation:

LuMind Research Down Syndrome Foundation is dedicated to meaningfully improve health and independence in people with Down syndrome through cutting-edge science. Established in 2004, we have invested $17M in research at top academic institutions and biopharmaceutical companies leading to substantial concurrent funding from the NIH, industry and other sources. LuMind RDS-funded research has led to the discovery of 10 therapeutic targets, the development of 2 Down syndrome-specific cognitive assessment scales, the conduct of 14 interventional and observational clinical trials in 1300 participants and the initiation of several consortia. LuMind RDS is striving to significantly improve independence and health for all individuals with Down syndrome by focusing on four scientific research areas: prevent Alzheimer’s onset, improve cognition, develop gene therapies, and advance understanding. LuMind RDS provides grants to groundbreaking projects at top academic institutions, collaborates with public agencies, other Down syndrome organizations and the pharmaceutical industry to rapidly advance new treatments for individuals with Down syndrome.


Media Inquiries:

Marly Chevrette 
LuMind Research Down Syndrome Foundation
mchevrette@lumindrds.org