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April 30, 2021 (Burlington, MA) – Today the LuMind IDSC Foundation, a leading national Down syndrome research and advocacy organization, announced the establishment of the LuMind IDSC Research Consortium to accelerate research into critical medical issues impacting people with Down syndrome. AbbVie and Merck, known as MSD outside the United States and Canada, are the first members of the LuMind IDSC Research Consortium, an association which is modeled on a previous collaboration between LuMind IDSC and Eli Lilly and Company.

The multimillion-dollar project is the first step in bridging academia, industry, and Down syndrome experts to build a structured and focused translational approach to Down syndrome-related research. The Consortium’s shared goal is to create and drive high-impact research projects that identify and develop pre-clinical tools and accelerate research efforts in the DS community.

“The goal of the LuMind IDSC Research Consortium is to unify resources and strategy toward a data-driven approach that facilitates and amplifies industry work on the medical issues affecting people with Down syndrome,” said Hampus Hillerstrom, CEO of LuMind IDSC and the parent of a child with Down syndrome. Hillerstrom noted this type of partnership, encouraged by policy leaders and the Federal Drug Administration (FDA), is unique in the Down syndrome world.

“We are very grateful to the Research Consortium’s first participants, Merck and AbbVie, for recognizing and responding to the dearth of research in the Down syndrome arena,” Hillerstrom said. “It’s time for us to make giant steps together and find answers to some of our community’s most critical questions, especially the early onset of Alzheimer’s disease.”

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.

One of the first projects to receive a boost from the Research Consortium is the Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR) study. Initially launched in 2018, LIFE-DSR is a longitudinal cohort study of 270 adults with Down syndrome, their medical histories, blood samples, and neuropsychological testing data.

The LuMind IDSC Research Consortium is already reviewing expansion plans to include medical device and other therapeutics developers. A parallel project to LIFE-DSR with Lilly and the National Down Syndrome Society (NDSS) seeks to better understand the obstacles people with Down syndrome and their caregivers encounter when trying to participate in clinical trials and research studies.


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. Since 2004, LuMind IDSC has raised a total of $85M in funding for Down syndrome research to prevent the onset of Alzheimer’s disease, improve cognition, develop gene therapies, and advance understanding. For more information, visit


For questions, contact:

Kate O’Neill, LuMind IDSC

[email protected], 781-825-1303