As a comprehensive source of healthcare knowledge, the library is a valuable asset for people with Down syndrome and their community

With the support of The Linda and Mike Mussallem Foundation, the Adult Down Syndrome Center (ADSC) recently launched an enhanced online Resource Library.

The website provides comprehensive healthcare information for adults and adolescents with Down syndrome, their families, caregivers, and health professionals. In this way, the Resource Library is continuing to successfully address unmet needs as more people with Down syndrome live longer, more prosperous lives.

“There’s been tremendous progress made in supporting individuals with Down syndrome to live healthier lives,” said Brian Chicoine, MD, Medical Director of the ADSC. “There is a larger population of adults with Down syndrome than ever before, and these individuals—along with their families and caregivers—are eager for information tailored to their needs that historically has not been readily available.”

Since the mid-1980s, the life expectancy of people with Down syndrome has doubled from 28 years to 60 years, and the population of adults with Down syndrome has increased eightfold from 1950. Many of these individuals—who may live in their own homes, with families, or in shared housing—want to actively participate in their own health promotion, Dr. Chicoine said.

The Resource Library accordingly provides helpful and accessible information not only on broader healthcare goals such as immunizations, eating healthy diets, and getting enough exercise and sleep, but also the unique health profile of people with Down syndrome which includes increased risk of congenital heart defects, hypothyroidism, and early-onset Alzheimer’s disease. The content in the library encompasses articles, visuals, videos, links to trusted external information, and popular webinars on topics such as navigating puberty and aging with Down syndrome.

The ADSC opened its doors 34 years ago as the first clinic of its kind in the United States  centered on serving the health needs of people with Down syndrome who had aged out of childhood medical care. Located on the campus of Advocate Lutheran General Hospital in Park Ridge, Illinois, and managed by Advocate Medical Group, the clinic has served nearly 7,000 individuals so far. Linda and Mike Mussallem have been supporters of the ADSC since 2005.

Based on the ever-growing and specialized knowledge gained from these patient interactions, the ADSC created the Resource Library in 2018 with funding from the Mussallem Foundation. Thanks to the foundation’s continuing support, the website has remained free of charge for all visitors. A 2025 donation enabled the significant enhancements rolled out this year, including a search engine upgrade, more intuitive navigation, modified organization to boost discoverability, and aesthetic updates.

“We see our Resource Library as a hub where people can come to find health information related to adolescents and adults with Down syndrome,” said Laura Krohn, Project Manager for Research and Education at the ADSC. “The Mussallems have made it all possible. It’s been a huge gift to the community to recognize the value and worth of making more resources available to people with Down syndrome and their families.”

Many users of the Resource Library and the ADSC have expressed deep appreciation for the knowledge contained therein and the respect and dignity afforded to them and their loved ones with Down syndrome. “Such a wealth of information. I am so grateful!” one user commented on social media, with others adding “I love this website. It is an invaluable resource,” and “There are so few resources . . . You have been a light.”

“For people with Down syndrome and their families, it can be incredibly challenging to find healthcare resources that are specialized to the Down syndrome population,” said Linda and Mike Mussallem, Co-Founders of the Linda and Mike Mussallem Foundation. “It makes a huge difference when families have access to real information instead of having to guess. The ADSC’s Resource Library is putting high-quality, trustworthy information within reach of everyone in the Down syndrome community who needs it, and we are proud to support Dr. Chicoine and his team’s efforts to create such a valuable resource.”

You can help the Adult Down Syndrome Center provide compassionate care and valuable resources for our patients and families. Make a gift today.