NDSS Contact:
Michelle Sagan
media@ndss.org
301-728-0447
Comprehensive online resource aims to equip primary care providers with specialized information on the unique healthcare needs of adults with Down syndrome
Washington, D.C. (March 4, 2025) – To help raise the standard of care for adults with Down syndrome, National Down Syndrome Society (“NDSS”) announced the launch of the CARE Down Syndrome Project, an online educational resource which aims to equip primary care providers with the knowledge required to meet the specific healthcare needs of individuals with Down syndrome. The project is being launched in partnership with Brian Chicoine, MD, Medical Director of Advocate Medical Group’s Adult Down Syndrome Center (“the Center”) and with support from The Linda and Mike Mussallem Foundation.
While the average lifespan of adults with Down syndrome has improved over the decades, estimates show that only 5% of this population in the United States have access to a healthcare clinic that specializes in caring for their distinctive healthcare needs. Because of this, the vast majority of adults with Down syndrome obtain their healthcare from primary care providers who receive limited education about common health issues with this population in medical school.
The CARE Down Syndrome Project will help bridge this gap by ensuring the broader medical community has access to crucial educational information focused on the healthcare considerations of adults with Down syndrome. The comprehensive online resource will include a two-hour, self-paced, accredited eLearning course and a free library of additional specialized information written and reviewed by 35 clinical experts in the field of Down syndrome, led by the efforts of Dr. Chicoine.
The Linda and Mike Mussallem Foundation is providing $1.7 million in financial support to NDSS for the launch of the CARE Down Syndrome Project. The Mussallem’s gift provides essential funding to extend Dr. Chicoine’s vital research and expertise beyond the Center’s physical walls so that the broader Down syndrome community and primary care providers worldwide are better prepared to improve the lives of this community.
“Linda and I have seen firsthand how our brothers, George and Bob, have navigated challenges in the healthcare system, and how much of a difference a well-informed, compassionate health care provider can make in the life of individuals with Down syndrome,” said Mike Mussallem. “We believe that more individuals with Down syndrome and their caretakers should have access to specialized clinics like the Center, especially since their unique health care needs are often unmet by today’s healthcare system. That’s why we are proud to partner with NDSS and Dr. Chicoine to reach primary care providers with valuable and critical information and insights designed to improve the standard of care for this underserved community.”
“This project is a crucial step in addressing ongoing disparities in healthcare and ensuring adults with Down syndrome receive the comprehensive care they deserve,” said NDSS President & CEO Kandi Pickard. “We are thankful to the Linda and Mike Mussallem Foundation for their generous support which makes this important work possible.”
The CARE Down Syndrome Project is expected to be available to the public in October 2025. To receive email notifications about the project or to donate, visit https://www.careds.org. To learn more about the Linda and Mike Mussallem Foundation, visit https://www.mussallemfoundation.org/.
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About NDSS
Founded in 1979, the National Down Syndrome Society (NDSS) empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions. NDSS engages grassroots advocates at the federal, state, and local levels and creates resources to support individuals with Down syndrome, their families, and caregivers across the lifespan on topics including education, employment, health and wellness, and aging. 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.
About the Linda and Mike Mussallem Foundation
After decades of philanthropic commitments, Linda and Mike officially unveiled The
Linda and Mike Mussallem Foundation in 2024. The Linda and Mike Mussallem Foundation aims to harness the power of innovation and integrative health solutions to address complex health care challenges and create meaningful, long-lasting change for overlooked populations in need. Learn more at www.mussallemfoundation.org.