The Jett Foundation, an organization that raises awareness for Duchenne muscular dystrophy, announced the route for its annual, cross-country cycling event, Jettride, and Lebanon will be one of the stops.
The two-week tour will begin on July 12 in Sandusky, OH and culminate in Point Pleasant, NJ on July 26. Jettride will make stops along the way in cities and towns along the route including Pittsburgh, Gettysburg, Philadelphia, and, as previously mentioned, Lebanon.
Duchenne muscular dystrophy is a progressive neuromuscular disorder, most commonly seen in boys, that causes loss of muscle function and independence. Duchenne is the most common lethal genetic disorder in children worldwide.
Most children diagnosed with Duchenne lose the ability to walk by age 12, and sadly very few live to see the age of 25, as there is no known cure for Duchenne muscular dystrophy.
The Jett Foundation was founded by Christine and Stephen McSherry in 2001 after learning that their son, Jett, had been diagnosed with Duchenne muscular dystrophy.
Lebanon’s Perlita Hains knows first hand of all the good that the Jett Foundation and Jettride have to offer. Her 12 year-old son, Levi, was diagnosed with Duchenne muscular dystrophy in 2008.
While there are multiple organizations that help families who have a child with Duchenne, for Hains, there was an instant connection with the Jett Foundation.
“Jett was a great match,” she said. “I do some volunteer work for them, I network with other parents to tell them about programs that the foundation offers. That’s just how we got involved with the Jett Foundation.”
“They just do amazing things for families.”
One of those amazing things that the Jett Foundation will help Levi directly. Following the family’s own fundraising efforts which gathered $25,000, the foundation will match those funds which will be used to purchase a van that will be accessible for Levi’s power chair.
Being active in the Duchenne community is a family affair for the Hainses, whose husband and two older sons, Lance and Luke, are also heavily involved.
In fact, this summer Lance and Luke will be taking part in Jettride for the second year in a row.
“They are very, very happy to do it. They love their brother like I can’t even describe. They’re 19 and 16, and they’ve lived with Duchenne their whole lives as well,” their mother said, “Even though Levi has Duchenne, Luke and Lance are deftly affected by Duchenne.”
Jettride allows teenagers like Lance and Luke to meet other Duchenne siblings who are capable of relating with them. In the process, the riders raise money for the Jett Foundation which goes right back to helping their siblings. Last year’s ride raised over $50,000.
Riders will travel as many as 70 miles on each leg of the two-week ride. After each leg, riders are able to meet with a Duchenne family, who serve as hosts. For the Lebanon stop, the Hainses will host the riders.