Rally for Ryan—A Million Ways to a Cure

By Hilary Decent
November 2015 View more Humanitarian

Geri, Ryan, and Marty Karlin
Rally for Ryan Founders

Thirteen-year-old Ryan Karlin is not taking an incurable degenerative muscle-wasting disorder lying down. Nationally he has lobbied his congressman, while locally he has inspired his family to hold an annual fundraiser for the past seven years. This year, Rally for Ryan is aiming to break through the $1 million barrier raising funds for research and chemical trials in the fight against Duchenne Muscular Dystrophy (DMD).

“I think what my parents do is good because it is not only helping me, but all boys with MDA,” said Karlin.
In many ways Ryan is a typical Naperville teenager. He’s an eighth grader at Still Middle School and in August he celebrated his barmitzvah at Congregation Beth Shalom. He’s very active, although now uses a scooter to get around school.

“I have a team of friends who help me if I fall over,” he explained. “They are learning a lot about DMD. I think it’s made the bonds with my friends stronger. I’m helping them to understand.”

Early Warning Signs

Ryan is a passionate Blackhawks fan and was lucky enough to watch their recent Stanley Cup win rink side. He’s met several players and is the proud owner of a puck given to him by Jonathan Toews. His mother Geri said it was while Ryan was playing ice hockey as a five-year-old that she first learned something was wrong.

“His kindergarten teacher said he was always the last kid up off the floor and when they played ice hockey he couldn’t get up,” she said. “My brother had DMD so I knew the signs. I took him to the doctor right away. I just had a gut feeling.”
Geri and her husband Marty, who have three older daughters, were understandably horrified by the diagnosis.

Diagnosing a Disease

DMD is a genetic disease, which affects 1 in 3,500 boys. Most DMD children die in their late teens or early 20s. It leads to respiratory failure, heart failure, and debilitating orthopedic complications. Boys usually experience degenerative muscle weakness and loss of ambulation by their mid-teens.

“I’m a fighter, so once we got over the initial shock we decided that we would hold a fundraiser to raise money for research and bring awareness to the disease,” said Geri, a former nurse. “I think it has helped me to heal a little bit.”

A Million Ways to a Cure

On November 14, the Karlin’s are hosting the seventh Rally for Ryan—A Million Ways to a Cure, at White Eagle Golf Club in Naperville. Naperville Councilwoman Rebecca Boyd-Obarski will entertain with music from a cappella quartet AC•Rock.
Marty said this is a very special year for the campaign because they hope to break the $1 million mark. So far, they have raised $902,000.

“We got involved because I wanted to do something,” he said. “It started with a simple raffle seven years ago. Now the event attracts up to 300 people. We have live entertainment, a dinner and a silent auction.”

As Rally for Ryan has grown, the 501c3 organization has partnered with the Muscular Dystrophy Association and Parent Project Muscular Dystrophy.

“By pooling our funds we can help the bigger cause,” said Marty. “Rally for Ryan is dedicated to finding a cure for this devastating disease. All the money raised will go to researchers that are diligently trying to find treatments and ultimately a cure for Duchenne Muscular Dystrophy. This dreadful disease took Ryan’s uncle Patrick from us at age 17, and we are committed to making sure this disease does not get passed down to another generation.”

Visit www.rallyforryan.org for tickets or more information.