By John Chambless
Staff Writer

On April 22, the local community will once again unite behind the Johnson family for the Eighth Annual Run For Our Sons benefit. The annual run is held in honor of Elliott and Henry Johnson, and raises funds for research into a cure for Duchenne Muscular Dystrophy.

The mother of the two boys, Joanna Johnson, is a Spanish teacher at Unionville High School. In a message to the community posted on the webpage for the event, Johnson wrote, “My two sons, Elliott (13) and Henry (10), were diagnosed with Duchenne muscular dystrophy in 2007. Duchenne is a catastrophic muscle wasting disease that affects all the muscles of the body, including the heart and lungs. Most boys with Duchenne lose the ability to walk by their teens. This is followed by severe lung and heart complications. Survival beyond age 30 is rare. There is no cure.

“Despite this catastrophic diagnosis, there is something that Duchenne can never take away from us, and that is hope,” Johnson continued. “With the help of this amazing community, hope is alive and well, and we know a future without Duchenne is possible. We are proud to say that over the last seven years of Unionville Run for our Sons, we have raised over $360,000 for Parent Project Muscular Dystrophy to support Duchenne research.”

The race opens with registration at 8 a.m. on April 22, and the event begins at 9 a.m. There is a 5K and a 1.5-mile course, both of which leave from Charles F. Patton Middle School (760 Unionville Rd., Kennett Square).

Runners and walkers leave the school campus and turn right on Unionville Road, go left on Chapel Drive, continue in a loop around Soltner Drive and back out Chapel Drive. Runners and walkers will then turn right on southbound Unionville Road. Walkers will turn left, back to the school, and runners will continue to the southern entrance to Manor Drive. Runners turn right for a loop course along Manor Drive, then onto Fox Hunt Drive and back to Manor Drive. Runners then turn north on Unionville Road for a return to the school.

There will be door prizes and raffles, as well as refreshments available. Awards will be given for overall male and female winners. Family Fun Day events at the school include games, Gobo the Clown and face painting.
In her message to the community, Johnson wrote, “For years, I have longed to share good news about the progress being made with Duchenne research, and finally I can. On Sept. 19, 2016, the Federal Drug Administration approved the first drug ever to treat Duchenne muscular dystrophy, eteplirsen, now known as Exondys51. This was a historic moment for the community and something we all worked hard for and wanted desperately. Every dollar donated, every mile run, every person that became educated or educated someone else about this rare disease made an impact and made a difference.

“Unfortunately, the drug will not be a viable option for Elliott and Henry, based on their genetic mutation,” Johnson wrote. “But the hope is that the Exondys51 approval will move approvals for other Duchenne treatments in a positive direction. In fact, Elliott and Henry have been involved in a clinical trial for a drug called Translarna to treat their particular genetic mutation. It is currently in the review process with the FDA.

“We need to continue the momentum to ensure that treatments are made available to all those that have Duchenne. Once that milestone is reached, we will continue our work until a cure is found and we can say we have ended Duchenne once and for all.”

Registration is $30 per person ($25 for students). Participants can register or donate at www.parentprojectmd.org/unionville.

To contact Staff Writer John Chambless, email [email protected].