Global Down Syndrome Foundation Congressional Briefing

On June 15 the Global Down Syndrome Foundation held a Congressional Briefing in Washington D.C. focused on the link between Down syndrome and Alzheimer’s disease. Global was fortunate to have a stellar cast of speakers: Dr. Richard J. Hodes, Director of the National Institute of Aging at the National Institutes of Health (NIH); lead Crnic Institute scientists Drs. Joaquín Espinosa, Tom Blumenthal and Huntington Potter; Members of Congress Cathy McMorris Rodgers (R-WA), Rosa DeLauro (D-CT), and Pete Sessions (R-TX); and actor, author and advocate Frank Stephens (watch excerpts from Stephens’ presentation). Among those in the audience were 40 members of the Global family including 10 self-advocates, over 30 legislative and health staffers, key scientists from the NICHD and NIA, and representatives from LuMind, NDSC, NDSS, Down Syndrome Network of Montgomery County, Down Syndrome Association of Northern Virginia, and Down Syndrome Association of Greater Richmond.

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Congresswoman Cathy McMorris Rodgers (R-WA), Congresswomen Rosa DeLauro (D-CT), and Congressman Pete Sessions (R-TX) each spoke about the importance of funding research surrounding the link between Alzheimer’s disease and Down syndrome:

“Global Down Syndrome Foundation brings the very best for all of us. We all own this, not a few of us.  We all own this opportunity to move ahead. This has nothing to do with politics, get away from it and don’t think it. Progress is being made in our lifetime right in front of us and it’s up to us to get behind Global and make it a reality.”

– U.S. Representative Pete Sessions

“As the mom of a young boy with Down syndrome, I am reminded daily of the potential of every human life. Everyone deserves the opportunity to pursue their version of the American Dream. I applaud Global Down Syndrome and the work they’re doing on researching why individuals are born with a third 21st chromosome, what it means for those with Down syndrome, and how they can live longer, happier, and healthier lives. I look forward to seeing the results of the Human Trisomy Project and what the research will yield.”

– U.S. Representative Cathy McMorris Rodgers

“What greater cause is there than research that can save lives? Funding this research has the potential to do more than anything else that the federal government does. Why are we not going to war with our resources? If NIH supports funding of Down syndrome research we could improve the lives of people with Down syndrome while also conquering other diseases and disorders this group suffers from, like Alzheimer’s disease.”

– U.S. Representative Rosa DeLauro

Dr. Hodes detailed the link between Down syndrome and Alzheimer’s disease and the initiatives the NIA and NIH are taking to fund research; Hodes also encouraged people with Down syndrome to register for DS Connect, a family-centered registry to aid in future Down syndrome research. Linda Crnic Institute for Down Syndrome researchers Tom Blumenthal, Ph.D., Huntington Potter, Ph.D., and Joaquín Espinosa, Ph.D., presented on the biomedical research being conducted at the Crnic Institute for Down Syndrome, studies of Down syndrome and Alzheimer’s disease pathology, and the Human Trisome Project (HTP), respectively. Global, in conjunction with the Crnic Institute, is proud to be rolling out the HTP which will research, create diagnostics and potential cures for a range of diseases that people with Down syndrome are prone to or protected from – including Alzheimer’s disease.

Concluding the afternoon, self-advocate Frank Stephens highlighted the progress that has been made in both medical care and quality of life for people with Down syndrome in his lifetime, and challenged the audience to continue the research that stands to drastically improve the lives of people with Down syndrome as well as the typical population:

With your support, Global will continue to fund scientists and doctors doing this important work with the urgency it deserves.