Your advocacy is making a difference!

The Down Syndrome Coalition, along with our colleagues from the Down Syndrome Diagnosis Network (DSDN), Down Syndrome Medical Interest Group-USA (DSMIG), International Mosaic Down Syndrome Association (IMDSA), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG), and in partnership with our self-advocates and families, succeeded in removing discriminatory language from an important healthcare coverage determination that would have excluded people with Down syndrome from clinical trials for a new class of Alzheimer’s treatments With more than 1,800 individual comments submitted by the Down syndrome community, this community’s voice was too loud to ignore, and we are one step closer to our goal of making sure adults with Down syndrome have equitable access to treatment options for Alzheimer’s disease.

Together we strive to ensure that governmental entities, such as the Centers for Medicare & Medicaid Services (CMS), the Food and Drug Administration (FDA), and the National Institutes of Health (NIH), as well as private pharmaceutical companies, are all working to provide equitable access to Alzheimer’s treatments for the Down syndrome community now and in the future. This work is critical because it is estimated that the lifetime risk for people with Down syndrome to develop Alzheimer’s disease is over 90%. Alzheimer’s disease is the leading cause of death for members of our community. The next phase of our collective advocacy must be focused on supporting the inclusion of people with Down syndrome in clinical trials for Alzheimer’s treatments.

The Down Syndrome Coalition: GiGi’s Playhouse was pleased to participate in the first national Down Syndrome Policy Symposium hosted by the National Down Syndrome Society, on April 3^rd and 4^th. The meeting served as an opportunity for the six largest Down syndrome organizations in the U.S. to build better working relationships and concrete strategies aimed at tackling policy issues critical to the Down syndrome community. The newly formed coalition consists of the Down Syndrome Affiliates in Action (DSAIA), GiGi’s Playhouse Down Syndrome Achievement Centers, Global Down Syndrome Foundation (Global), LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS) and others as we work together to increase awareness and affect change for individuals with Down syndrome and their families. The group is pictured below with Judy Huemann, civil rights activist, and the author of the Americans with Disability Act.