Washington DC, Sept. 30, 2025 (GLOBE NEWSWIRE) -- The National Down Syndrome Society (NDSS) announced that LuMind IDSC Foundation, the nation’s leading Down syndrome and Alzheimer’s disease research organization, is merging into NDSS. For nearly five decades, NDSS has served as the national voice for individuals with Down syndrome and their families, driving advocacy and providing resources across the lifespan. While research was among NDSS’ original priorities, the organization grew, and its focus shifted toward expanding programs and directly supporting families. This merger brings that research focus back under one roof, combining NDSS’ community leadership, reach, and policy influence with LuMind’s research expertise and officially launches a new Research pillar of NDSS.
“This is a historic moment for the Down syndrome community,” said Kandi Pickard, who will continue as CEO of NDSS. “As individuals with Down syndrome face a 90% lifetime risk of developing Alzheimer’s disease with earlier onset and faster progression than the general population, it is critical that families have access to the research-related knowledge, trials, and opportunities they need to thrive. Merging LuMind into NDSS will allow us to build on scientific progress to drive better health outcomes for generations to come.”
This merger provides NDSS with expanded capacity to conduct clinical research projects, create research-related education tools, increase access to breakthrough treatments, educate policymakers about the unique aspects of Down syndrome research, and connect families to opportunities to learn about and participate in the latest research and clinical trials. In addition to Alzheimer’s disease research, the new Research pillar will prioritize health equity campaigns and innovative programs such as CARE Down Syndrome, an online educational initiative that aims to equip primary care providers with the knowledge required to meet the healthcare needs of individuals with Down syndrome.
“Our mission has always been to accelerate research and empower families,” said Hampus Hillerstrom, current CEO of LuMind who will become President of NDSS. “As part of NDSS, we will continue advancing breakthroughs and delivering real impact for the Down syndrome community through research. We are excited about the increased impact for the Down syndrome community that our larger combined organization can have.”
The merger also resonates personally for NDSS Board Chairman Carlo Frappolli who said, “Alzheimer’s disease isn’t a distant concern for our community. My brother Joe is 62 years old, has Down syndrome, and now suffering from Alzheimer’s disease, with the disease progressing quickly. By merging with LuMind, we are acting now to improve health outcomes for future generations.”
NDSS’ current programs, advocacy, and community initiatives will remain robust. With the scientific momentum of LuMind, NDSS is poised to create a more equitable future where individuals with Down syndrome have the resources, opportunities, and support they need to thrive throughout their lifetime. The merger will be effective October 1, with public announcements, digital resources, and family outreach rolling out in the weeks ahead. Learn more at https://ndss.org/lumind-joins-ndss.
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About NDSS
The National Down Syndrome Society’s (NDSS) mission is to create a world where individuals with Down syndrome thrive. NDSS advances this mission through its core pillars of Resources & Support, Research, Advocacy & Policy, and Community Engagement. NDSS founded the National Buddy Walk® Program in 1995 and hosts community engagement events throughout the country including the New York City Buddy Walk® and Times Square Video, the NDSS Adult Summit, and the Down Syndrome Advocacy Conference. Visit www.ndss.org to learn more.
Michelle Sagan National Down Syndrome Society 202 848 5409 msagan@ndss.org
