You can help individuals with Down syndrome get the specialized care they need

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You can help individuals with Down syndrome get the specialized care they need
(L-R) Nina and her parents, Meg and Mark

Nina was a young teenager when she started receiving care at Advocate Medical Group’s Adult Down Syndrome Center (ADSC). Located on the campus of Advocate Lutheran General Hospital, the ADSC provides patients with everything from holistic care and support to education and resources.

“Our nephew also has Down syndrome, and his family reminded us that the Center provides care for both adolescents and adults,” explained Nina’s mother, Meg. “It was such a wonderful asset for us to find. The Center takes a holistic approach to caring for the whole person – medically, socially and emotionally.”

Nina faced some health challenges in high school, and the Center was there for her and her family through it all.

“She was passing out and having pain. We didn’t understand what was going on with her, but Dr. Brian Chicoine and the team at the Adult Down Syndrome Center helped us unravel the puzzle and get Nina in a better place physically and emotionally. It was such a relief to be able to rely on the Center and its experts.”

A new appreciation

The Adult Down Syndrome Center celebrated its 25th anniversary in 2017.The ADSC was the first clinic established for adolescents and adults with Down syndrome and to this day remains the largest.

“It was so meaningful for our family to be able to participate in the celebration,” shared Meg. “It was an opportunity to reflect back on everything involved in the Center and all the years Dr. Chicoine and others have devoted to make it what it is today.”

Meg says the milestone gave her a new appreciation for how important the Center is not only for her family, but also for so many others.

“We feel so grateful that we happen to live near the Center, but obviously not every individual with Down syndrome has the same access to the specialized care that we do.”

Fortunately, there’s a new way for people to access the Center’s resources, regardless of where they live.

Sharing expertise across the globe

The Center launched its online resource library in late 2019, which was made possible thanks to a generous donor. The library opens up the Center’s expertise for health care professionals, families, caregivers and individuals with Down syndrome across the country and the world.

“It’s part of the Center’s mission to expand and share its resources with as many people as possible,” explained Meg. “It’s really exciting to know its scope will continue to expand and impact even more people.”

For Nina, it’s been a valuable educational tool that allows her to take responsibility for her own health.

“It’s remarkable how the resource library has resonated with her. She’s very interested in health and nutrition, and there are different tools she can learn from. For example, with the recent COVID-19 pandemic, she was able to watch a video about the importance of handwashing that she actually helped create.”

The library also promotes independence.

“My daughter wants to make her own decisions,” said Meg. “The more we can involve her in making decisions, the more successful she’ll be.”

In addition to tools for individuals with Down syndrome, there are many resources for families, caregivers and providers.

“Not everyone has access to a specialized Down syndrome center close to home, but everyone can use the resource library.”

How you can help

The Adult Down Syndrome Center relies on the generosity of donors to fund many of its programs. Charitable gifts enable patients to receive sensitive, specialized care that’s not available anywhere else in the Midwest. Please consider making a gift to support this unique resource today. To learn more about the Center, please visit our website.