IL State Representative Seeks to Build Awareness of Duchenne Muscular Dystrophy

FOR IMMEDIATE RELEASE
(Free-Press-Release.com) November 20, 2009 -- “After hearing about Naperville 7-year-old Ryan Karlin’s heart-wrenching story, I wanted to help bring greater awareness to this disorder. I called Springfield and immediately had a resolution drafted so that each year on Ryan’s birthday, the state of Illinois will recognize DMD. With about 20,000 new cases each year, it is critical that we educate the public, and help fight for a cure,” Rep. Senger said. House Resolution 751 names June 20 each year as Duchenne Muscular Dystrophy Day in the State of Illinois, in honor of Ryan's birthday.

While DMD is genetic, about 35 percent of the cases are the result of a random spontaneous mutation. Symptoms include degenerative muscle weakness, loss of ambulation by age 12, debilitating orthopedic complications, and heart or respiratory failure. In 2008, DMD was the leading commonly fatal genetic disorder to affect boys. Currently there is no cure, but there is promising research.

It’s the second time Ryan’s mother Geri has been confronted with DMD. The disorder took the life of her brother at age 17. Women can be carriers of the disease, although Geri was initially determined not to be a carrier. Today, Ryan is an active second-grader who loves soccer and baseball. He receives weekly physical therapy, wears leg braces at night, and practices water therapy. His three sisters will need to be tested before they choose to have children.

The Karlins founded Rally for Ryan in 2009 to help raise funding for research leading to effective therapeutic treatments and a cure to DMD. The couple, together with a committee of friends and family, hosted their first fundraiser in November and they plan several more. The Karlins have also committed personal matching money to their fundraising efforts.

Senger met the Karlins at the recent Rally for Ryan Kickoff event. “My heart really goes out to the Karlin family, who is fighting every day for the life of their child. Awareness is the first step in moving toward medical advances and innovative technologies that can help us tackle DMD and eventually find a cure,” Rep. Senger said.

“We are extremely honored and with our deepest gratitude, we would like to thank Rep. Senger for bringing this resolution of Duchenne Muscular Dystrophy awareness to the people of Illinois. For this awareness day to be on June 20th, Ryan’s Birthday, is a great tribute to him and we hope this awareness will bring us closer to a cure,” said Ryan’s parents, Marty and Geri Karlin. For more information on the Rally for Ryan and Duchenne Muscular Dystrophy, visit www.RallyforRyan.org.

     Darlene Senger     Duchenne Muscular Dystrophy     illinois     muscular dystrophy     Naperville