Skip to main content

BURLINGTON, Mass. January 18, 2019 – LuMind™ Research Down Syndrome Foundation (LuMind RDS) and International Down Syndrome Community (IDSC) are combining resources and expertise on a collaboration to create the IDSC LuMind RDS Facebook Group to better serve people with Down syndrome and their communities.

“An important part of the LuMind RDS mission is connecting families with the progress of research,” says Hampus Hillerstrom, President and CEO of LuMind RDS, “By collaborating with IDSC on this important Facebook group, families now have an easily accessible place to get updated on relevant Down syndrome research and medical care information, as well as exclusive Live Q&A events with researchers and clinicians.”

idsc lumindrds facebook group 450x386 1The IDSC LuMind RDS Research and Medical Care Facebook Group officially opens to new members on Tuesday, January 22, joining the existing 16 groups currently run by IDSC.

The first Facebook Live Q&A  – Understanding Evidence-based Research – on Friday, February 8, will be at 12:30 p.m. EST, led by James Hendrix, Ph.D., LuMind RDS Chief Scientific Officer, and Michelle Slape, IDSC Executive Director. Interested families and caregivers can begin to post the questions they would like to ask Dr. Hendrix as comments in the group or send private messages to the administrators until midnight on Feb 6.

“This exciting collaboration enables both of our organizations to better serve the Down syndrome community and further our respective missions,” said Beth Sullivan, Chairman of the IDSC. “Staunchly believing that our Down syndrome community is stronger together, we could not be more delighted with this partnership. Our organizations have a history of working collaboratively to empower our families and their loved ones with Down syndrome.”

Visit to join the group.


Established in 2004, LuMind Research Down Syndrome Foundation (LuMind RDS) has awarded more than $20M in research grants to fund groundbreaking projects at top academic institutions and biopharmaceutical companies leading to more than $50M in concurrent funding from the NIH, industry and other sources.

LuMind RDS-supported research has led to the discovery of 10 therapeutic targets, the development of 3 Down syndrome-specific assessment scales, 15 interventional and observational clinical trials with more than 1300 participants and the initiation of several consortia.

LuMind RDS is dedicated to enable independence and enrich community engagement for all individuals with Down syndrome by identifying and accelerating high impact research. The Foundation is focused on four scientific research areas ¾ preventing Alzheimer’s onset, improving cognition, developing gene therapies, and advancing understanding ¾ and collaborates with public agencies, other Down syndrome organizations, and the pharmaceutical industry to rapidly advance new treatment options for individuals with Down syndrome.


The International Down Syndrome Community (IDSC) is the foremost social media organization in the Down syndrome community. We foster the dignity and respect of people with Down syndrome with a focus on connecting, supporting, and empowering individuals with Down syndrome and their families from diagnosis and throughout life by providing online communities, collaboration with local and national partners, and connection to local support through regional events.

Informally formed in 2008, the IDSC incorporated as a 501©3 in 2013. IDSC’s key areas of focus are connection, advocacy, empowerment, inclusion, inspiration, support, and information. IDSC is known for the IDSC Family Weekend at Great Wolf Lodge – an annual regional event across 17 locations, Facebook focus groups, adoption grants, and a long-running photo campaign.

Looking forward, IDSC will continue to: support new families; plan annual regional events; inform, advocate, empower, and inspire people with Down syndrome and their families; collaborate nationally and internationally; and focus on the importance of the messages of research and the idea of a community that is stronger together.