The average lifespan of adults with Down syndrome has more than doubled to 60 years of age over the past four decades due to education, continued research and improved health care. However, a stark reality remains: most of the medical system is not resourced to support this deserving and growing community and to meet the unique features of their care. Because of this, it is highly challenging for people with Down syndrome and their families and advocates to find health care providers who are knowledgeable about common health issues with this population and equipped to share insights to nurture their dignity.
To help solve this challenge, Advocate Medical Group’s Adult Down Syndrome Center (“the Center”) is one of the few primary care clinics worldwide dedicated to caring for adolescents and adults with Down syndrome. The volume of patients and the complexities of care the team oversees, the purposeful involvement of people with Down syndrome in their own health journey, as well as the interdisciplinary approach, has made the Center a vital source of health care best practices in the adult Down syndrome community.
“It is estimated that only 5% of adults with Down syndrome in the United States have access to a clinic like Advocate Medical Group’s Adult Down Syndrome Center. While replicating our center nationwide may not be feasible, we strive to ensure the remaining 95% have access to quality care and the wealth of information and insights we have garnered from our patients and their families,” said Brian Chicoine, MD, Medical Director of the Center. “We want not only the people we serve at our Center to benefit from the knowledge our experience has provided, but also those who don’t have access.”
Thanks to a record-breaking $5.6 million gift made by the Linda and Mike Mussallem Foundation, the Center’s medical team will expand its research and education capabilities, enabling the Center to share its findings with the broader medical community and support adolescents and adults with Down syndrome who lack access to similar clinics.
“Linda and I are thrilled to continue our partnership with Advocate Medical Group’s Adult Down Syndrome Center to elevate healthcare for this underserved population,” said Mike Mussallem. “We both learned through our brothers early on that individuals with Down syndrome have specific health care needs that are often unmet by today’s healthcare system. Increasing doctors’ access to critical and sophisticated educational resources, including the tools for delivering quality and compassionate care, is key to enhancing the lives of people with Down syndrome.”
Linda and Mike have a long history of supporting the Down syndrome community, beginning with their brothers, Bob and George, who had Down syndrome. Mike's brother, George, was a long-time patient of Dr. Chicoine. Inspired by this experience and the determination of their mothers, who committed themselves to provide a better future for their sons and others like them, Linda and Mike have since collaborated with Dr. Chicoine and his team to address gaps in care and uplift the health status of the entire Down syndrome community.
Currently, Dr. Chicoine and his colleagues are involved in research initiatives that take a closer look at health issues impacting individuals with Down syndrome, such as Alzheimer’s disease, health screening and customization of medical care. Simultaneously, the team is also committed to sharing information about mental health conditions, healthy aging, social skills, and other health-related topics to support people with Down syndrome, their families and caregivers. Many of these resources are available on the Center’s free online library that houses over 500 resources and is utilized by medical professionals, caregivers and people with Down syndrome in more than 100 countries.
To help extend the Center’s research and expertise beyond its physical walls so that physicians and the broader Down syndrome community around the world have access to important educational information, Linda and Mike have also made a second generous gift for the creation of an educational resource for medical professionals, specifically focused on health care for adults with Down syndrome. The CARE Down Syndrome initiative, hosted in partnership with the National Down Syndrome Society (NDSS) and Dr. Chicoine, will include an online educational course, clinical decision trees and a resource library free of charge for medical professionals.
“We are honored and deeply grateful to receive this extraordinary gift from Linda and Mike Mussallem,” said Dr. Chicoine. “Their generosity will allow us to not only to better serve the people we serve at our Clinic but to be able to reach the broader medical community with educational resources to raise the standard of care for adults with Down syndrome.”
This gift from the Linda and Mike Mussallem Foundation is the largest donation the Center, located on the Advocate Lutheran General Hospital campus in Park Ridge, IL, has received in its 33-year history.
About Linda and Mike Mussallem
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.
You can help the Adult Down Syndrome Center provide compassionate care and valuable resources for our patients and families. Make a gift today.