By JP Phillips
Correspondent

April 6 arrived as a cloudy and crisp spring morning as the tenth annual Unionville Run for our Sons wound its way through the rolling terrain of the La Reserve and Fox Lee Manor neighborhoods, starting and ending at Charles F. Patton Middle School. 

People came out to run, walk, ride scooters, or push strollers.  But mostly they came to show support for the Johnson family and their fight against Duchenne muscular dystrophy.

Organized by Unionville high school Spanish teacher Joanna Johnson and her husband Paul, the Run honors their sons Elliot (15) and Henry (12), who both have the disorder. The purpose of the event is to raise community awareness and funds to fight the disorder and one day, hopefully soon, find a cure.

Joanna explained the disease’s effects in an informational video posted on the Unionville Chadds-Ford School District website.  “Duchenne is a fatal genetic disorder that slowly robs people of their muscle strength,” she said.  “First they lose their ability to walk, then they lose their ability to use their arms, then they need breathing assistance, and eventually die from heart failure. Survival beyond age 30 is rare, and there is no cure.” 

Joanna said that in year one of the run, the boys’ disorder was barely noticeable. But now, ten years later, the differences are stark. 

“Right before last year’s run, Elliot fell and suffered a femur break and has not walked independently since that day,” she said. “Henry can only take a few steps with assistance.” Then she added, “I don’t allow myself to focus on the negative. I focus on what I can do to make a difference. This community has shown me over and over again that you care, and that you are all by my side in this fight, and I really could not be more grateful.”

All proceeds go to Parent Project for Muscular Dystrophy (PPMD), a non-profit group started in 1994. Their mission is to end Duchenne by investing in research and advocating in Washington, D.C.  PPMD has invested more than $50 million and has leveraged over $500 million more since its inception.

Joanna said that PPMD is integral to the progress in finding a cure. There are now 20 drugs in clinical trials. This past January, a promising new gene therapy trial was started.

This year’s run raised more than $43,000 so far. Donations are still being accepted, and the online auction is open until April 14 (www.one.bidpal.net/UNIONVILLERFOS2019/welcome).

This year’s event drew 425 participants and 80 volunteers.  The top three racers were Paul Springer, who ran the 5K course in 17 minutes 12.5 seconds; John Paul Gagliardi (18:56); and Olivia Young (19:25.2).

“This race truly is a labor of love,” Joanna said. “My husband and I spend countless hours putting this race together every year, and just when we think we can never do it again, we witness those runners take off and they re-energize us and motivate us to continue.”

She added, “This started off as an idea from a group of girls in a community service club in the middle school who wanted to make a difference for all those with Duchenne muscular dystrophy.” 

Looking at the over $520,000 raised so far, Johnson said, “We can say without a doubt that we have made a difference in the mission to end Duchenne.”