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With support from Lilly, LuMind IDSC launches key research and awareness activities to advance Down syndrome research

Eli Lilly and Co. joins the LuMind IDSC Research Consortium

2/22/2023 (Burlington, MA) – Today the LuMind IDSC Foundation, a leading national Down syndrome research organization, announced a new collaboration with Eli Lilly and Company (Lilly) aimed at accelerating research into and awareness of critical medical issues that impact people with Down syndrome (DS).

The multi-year project will begin immediately with three key community-based initiatives: (1) provide Lilly with policy, cultural, and medical expertise specific to the DS community’s struggles with Alzheimer’s disease and advise them on clinical trials considerations in DS for promising Alzheimer’s drug candidates in development; (2) create an awareness program to increase the number of people with DS who are informed of and willing to participate in clinical trials; and (3) produce educational videos featuring people with DS successfully participating in brain imaging scans (MRI, PET) so that others in the community can easily understand, consent to, and prepare for diagnostic brain scans in future research participation.

Lilly’s investment in Down syndrome research is a natural extension of the company’s longstanding position as a global leader in Alzheimer’s disease research.

“Lilly is committed to make our clinical trials as representative of the broader population as possible,” said Anne White, executive vice president at Lilly and president of Lilly’s neuroscience business unit. “We’re excited to work with LuMind to enable more people with Down syndrome to contribute to and potentially benefit from critical research studies in Alzheimer’s disease.”

Lilly will join LuMind IDSC’s Down Syndrome Research Consortium, which also includes AbbVie, Alkermes and Merck. The Consortium’s shared goal is to drive high-impact research and community readiness projects that accelerate the development of and access to promising treatments for conditions affecting the DS community.

“We’re excited and honored to launch this unique collaboration between a company that is on the cutting edge of medical research and an organization serving a community that urgently needs Alzheimer’s therapies,” said Hampus Hillerstrom, CEO of LuMind IDSC.

According to a study published in the 2017 Journal of Intellectual Disabilities, the lifetime risk of Down- syndrome-related Alzheimer’s disease (DS-AD) is greater than 90%. Another study in the Journal of the American Medical Association reports that Alzheimer’s disease is the leading cause of death for adults with Down syndrome.

“The sharing of information between Lilly and LuMind IDSC is a powerful tool for overcoming current barriers to research participation for people with Down syndrome,” Hillerstrom said. “It’s time for us to take giant steps together and find answers to some of our community’s most critical questions, especially the early age of onset of Alzheimer’s disease in adults with Down syndrome.”

About LuMind IDSC Foundation:

The LuMind IDSC Foundation (LuMind IDSC) envisions a world where every person with Down syndrome thrives with improved health, independence, and opportunities to reach their fullest potential. LuMind IDSC accelerates research to increase availability of therapeutic, diagnostic, and medical care options and provides resources, connections, and support to a vibrant community of individuals with Down syndrome and their families. Founded by two visionary families in 2004, LuMind IDSC has raised a total of $100M in funding for Down syndrome research to prevent the onset of Alzheimer’s disease, improve sleep, and advance independence for people with Down syndrome. For more information, visit

Contact:  Kate O’Neill, LuMind IDSC  [email protected]   508-344-4932