How far we’ve come, how far we need to go

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Mike and George, 1956

Advocate Medical Group’s Adult Down Syndrome Center announces $2.75 million matching gift to its fundraising campaign from the George and Bob Fund, in honor of brothers of Linda and Mike Mussallem.

In the 1940s and 50s, information about how to care for children with Down syndrome was nonexistent. After sometimes taking up to a year or longer for doctors to make a diagnosis, parents were often advised to institutionalize their children with Down syndrome, and to move on with their lives.

Many parents were not willing to give up their children to this heartbreaking fate, including Linda’s family, living in Ottawa, Illinois, and Mike’s family, living in Gary, Indiana. Linda’s brother, Bob, was born in 1942, and Mike’s brother, George, was born in 1950.

When Linda and Mike met after college, they learned that they shared a unique family experience with many similarities. Both of their mothers had changed their life courses to dedicate themselves to helping their sons achieve their highest potential. Both became home-school teachers, to instruct Bob and George in reading, writing, manners, getting along with others, self-respect and daily living skills like shoe tying, handling money and other varied tasks.

They demonstrated dedication and persistence not only to their sons, but also channeled this energy into creating communities of families like theirs. The women researched and learned about Down syndrome and sought support and funding for establishing and creating workshops, programs, employment opportunities and social outlets.

Captioned image Bob and George, 1980

Their years of dedicated efforts resulted in group housing and independent living opportunities for individuals with developmental disabilities in the communities of Ottawa and Gary. They also discovered jobs through community outreach programs so that their sons and others could experience the pride and independence enabled with work and a paycheck.

While the two women never had a chance to meet – Mike’s mother passed away before Linda and Mike were married – their dedication to their sons and the Down syndrome community continues with the work inspired by, and funded through, the George and Bob Fund established by Linda and Mike. Linda’s mother, now 98, continues her supportive efforts. She recently received a lifetime achievement award for her work and has had an independent living home named in her honor.

“Growing up as we did, we had the opportunity, and advantage, of realizing that people who look or act differently are not to be feared or teased, but rather should be shown kindness and respect. Our brothers filled each of our homes with love and joy, and made each of us better people,” said Mike, who is chairman and CEO of Edwards Lifesciences. “They knew their own shortcomings, but they were persistent. George accomplished so much in his life because he was given love, support and opportunity.”

Captioned image Linda and Bob, 1987

Over the years, more was learned about individuals with Down syndrome, and their life expectancy and access to opportunities increased. The Adult Down Syndrome Center was established in 1992 to address the health needs of the increasing number of adults with Down syndrome. The Center, located in Park Ridge, IL, is one of the few primary care clinics in the world devoted to adolescents and adults with Down syndrome. The Center’s interdisciplinary approach to patient care and efforts to involve individuals with Down syndrome in their own health and wellness have been critical to its success. It has been a key source of information in the sharing of best practices in the Down syndrome community.

“As we took on the work started by our mothers, we came to realize that there are common health issues shared by adolescents and adults with Down syndrome,” said Linda. “Good fortune led us to the Adult Down Syndrome Center for continuing care for Mike’s brother, George, and I was impressed with everything it had to offer. For years, George was treated with unmatched care and kindness by Dr. Brian Chicoine and the wonderful team who have both big brains and big hearts! We wish to support that kind of care going forward for other individuals and families,” said Linda.

Since its founding, the Center has grown from seeing patients two times per month in shared clinic space to seeing patients five days per week in a 6,500-square foot facility. As the reputation of the Center has grown, so too has the demand for its services.

Captioned image Linda and Mike Mussallem

This is why, on March 21, 2021, World Down Syndrome Day, Advocate Health Care Foundation will launch a multi-year fundraising campaign to raise $5.5 million for Advocate Medical Group’s Adult Down Syndrome Center. Linda and Mike will be supporting this campaign by matching funds up to $2.75 million, building upon previous gifts to the Center.

“The Mussallems’s generous lead donation and the many matching donations will make it possible to add a psychologist to our team to help promote, assess and address mental health concerns of our patients. Considering and understanding the whole person has always been part of the Center’s holistic approach. The generosity of our donors not only provides for that service but is also a positive statement in the belief of the importance of holistic care in the health of people with Down syndrome,” said Brian Chicoine, MD, Medical Director at the Adult Down Syndrome Center.

Funds for the campaign will also support research and education which includes a resource library, webinars and workshops. Gifts will help ensure patients receive holistic and comprehensive care, expand services and resources, and allow the Center to share its findings with the broader medical community to support adults with Down syndrome that do not have access to a clinic such as ours.

Mike said, “We want families and practitioners from all over the world to have access to the Center’s latest information and research for the care and support for individuals with Down syndrome. We have been fortunate and are in a position to give back to something we care about deeply.” Linda added, “We aspire to enhance the lives of families and their children with Down syndrome to the fullest extent possible.”

Find more information or make a donation to the campaign.