Local Couple Honored for 20 Years of Raising Awareness for Huntington’s Disease

For a Vernon Hills couple still so much in love after nearly 22 years, Marilyn and Barry Kahn rarely have a cross word for each other …

… instead, their fight is against a disease that currently has no cure.

For their dedication to raising awareness and finding a cure for Huntington’s disease that dates back more than 20 years, the Kahns were recently honored by the Huntington’s Disease Society of America (HDSA).

Marilyn was divorced for a year from her first husband when he was diagnosed with Huntington’s disease. She had never heard of it and didn’t ever suspect it would impact her family.

“I was really angry,” she says. “I don’t know if they knew the name for it or not, but relatives in his family had been sick, including his mother, whom I had never met. Nobody ever talked about it … it was treated as a big secret.”

Her former husband didn’t even know he was at risk for the genetic disease. Unsure if the disease would impact any of her three children, she tried to learn as much about as she could and joined a support group, which she credits for providing the information and support she desperately needed.

“Now, more people have now heard of it,” she says. “But we still hear stories similar to mine, where people have no idea they are at risk. It’s important to educate families about this disease.”

Huntington’s is a degenerative brain disorder that presently has no treatment or cure. It slowly diminishes the ability to walk, think, talk and reason. Symptoms typically emerge when a person is in the prime of life, between 30 and 50 years old.

Marilyn and Barry married in 1988, he credits Marilyn and her children for “changing the entire direction of my life.” Although he has no other connection to the disease, he not only joined Marilyn to educate and raise research funds, he’s taken on numerous leadership roles on the local HDSA board and currently serves as Treasurer on the HSDA National Board of Trustees.

Together, the Kahns have dedicated countless hours to provide education, support, and raise money for HDSA to fight the disease. From running silent auctions to golf outings, dinner dances to galas, they don’t count how much time they’ve devoted in hours—they’re just happy to know they’ve helped. For more than 16 years, they held monthly support groups in their former Lake Zurich home (now held at Advocate Condell Medical Center in Libertyville).

Proceeds from their fund-raising efforts benefit research, education, advocacy and the HDSA Center of Excellence at Rush University Medical Center, where people with Huntington’s and their families receive comprehensive medical, psychological and social services.

Marilyn says, “We had to do what we could to make things better. The people we’ve met have become a part of our extended family. When people get sick, when their family members die, we’re here. They’re part of our family, now.”

Marilyn’s former husband passed away in 2005, and thankfully, no one in their immediate family has been impacted by the disease. “Even if they never are, this is a cause we’re devoted to. We’ve met so many people that are important to us,” Barry says.

To participate in a local Huntington’s Disease support group, which meets at Condell Medical Center in Libertyville, contact Barry Kahn at 847-975-2403. To learn more about Huntington’s and to get involved in HDSA, please visit hdsa.org or call 1-800-345-HDSA.