Global, Crnic Institute Update Congress on Promising Down Syndrome Research and Participate in a Key NIH Meeting Addressing Clinical Trials for People with Down Syndrome

Global Down Syndrome Foundation Congressional Briefing
Congresswoman Cathy McMorris Rodgers

Global Down Syndrome Foundation Congressional Briefing
Crnic Institute Director of Alzheimer’s Research Dr. Huntington Potter

Global Down Syndrome Foundation Congressional Briefing
Dr. Potter with Maria Bonilla, Karina Bonilla, Jose Moreno-Campuzano, Maria Campuzano and Sahid Morano-Campuzano

Global Down Syndrome Foundation Congressional Briefing

Congressional Down Syndrome Caucus Briefing

Co-organized by the Global Down Syndrome Foundation, the Congressional Down Syndrome Caucus Briefing was held at the U.S. Capitol on April 22. The briefing, entitled “21st Century Advances in Down Syndrome Research Advocacy,” attracted over 40 people, including Members of Congress, congressional staff, self-advocates, family members and Down syndrome community leaders.

Speakers were represented by Global and the Linda Crnic Institute for Down Syndrome, including world-renowned Alzheimer’s scientist Dr. Huntington Potter. Speakers also came from the National Down Syndrome Society, National Down Syndrome Congress, and LuMind Research Down Syndrome Foundation.

Congresswoman Cathy McMorris Rodgers, Global Down Syndrome Foundation’s Quincy Jones Exceptional Award recipient, kicked off the briefing, highlighting the need to focus on research and medical care for people with Down syndrome now that the ABLE Act is passed. She referenced the 21st Century Cures Act as a possible vehicle for increased funding. The Act is a bipartisan, multi-agency initiative with the goal of accelerating the discovery, development and delivery of promising new treatments for diseases and conditions.

NIH Meeting – “Outcome Measures for Clinical Trials in Individuals with Down Syndrome”

Led by the Eunice Kennedy Shriver National Institute of Child Health and Human Development at the National Institutes of Health, this meeting convened over 40 experts including Down syndrome basic researchers, behavioral specialists, and clinicians, representatives from Roche pharmaceuticals, NIH leaders, Food and Drug Administration leaders, and specialists from other conditions such as Autism and Fragile X.

Global and Crnic representatives were key participants in this meeting.

Participants divided into working groups to identify measures that would be appropriate for testing children and adults with Down syndrome. Dr. Potter participated in both the cognition and medical/physical working groups, and discussed some of the potential biomarkers that could be tested to see if drugs are having an effect. Colorado State University behavioral and cognition specialist Dr. Debbie Fidler was a leading expert on the behavior working group.

The meeting was an important step toward addressing the priorities in the recently released NIH Down Syndrome Research Plan. Meeting participants will continue their hard work on this topic, and the NIH will publish the meeting outcomes in the coming year. Of course, more funding is needed to fulfill the goals of this plan, and Global is working hard in collaboration with other national Down syndrome organizations to increase funding for Down syndrome research.  

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