The Southern Chester County Weeklies (

Hundreds come out in support of Run For Our Sons

By Candice Monhollan, Kennett Paper

Monday, April 14, 2014

Now in its fifth year, the annual Unionville Run for Our Sons has grown into a bigger event than Joanna Johnson could have ever imagined, with the latest run on April 5.

“It was record-breaking,” Johnson said. “It was our biggest yet. We had 900 participants and unofficial totals are bringing us in at $52,000 raised thus far. It’s really incredible.”

The Spanish teacher at Unionville High School started the 5K race after both of her sons, Elliott and Henry, were diagnosed with Duchenne muscular dystrophy.

That was back in 2007. Now, Elliott, 10, is in fourth grade and Henry, 7, is in second.

“Elliott has been involved in a clinical trial for the last five years and we really do think it is making a difference for him as far as slowing down the progression of the disease,” Johnson said. “He’s experience a bit of a dip himself. Things are getting harder for him. I think he’s aware of it and it’s causing some sadness in him. It’s hard to explain to a 10-year-old that, for 10 years old, you’re doing really well. In his mind, that doesn’t mean anything.

“Unfortunately, his brother is not qualified for the trial at this point, so we’re kind of in this awkward position where we have one on and one off, but we’re fighting for hopefully some change in that.”

Helping to bring about that change is a big part of the reason why the Johnson family started and continues with the Run for Our Sons, though it wasn’t just them alone in the beginning.

“I think back to five years ago when I was approached by a teacher at the middle school who was interested in starting a community service club,” Johnson said. “Marcia DiGregorio approached me with a group of eighth grade girls who said, ‘You know, I think we can do a charity run.’

“At that point, we had no idea what we were getting ourselves into, but we could not have ever anticipated what it has come to be. It’s amazing to look back. It’s a lot of work that goes into it, but every year when I look back, I think it’s worth every ounce of sweat that went into it.”

Since then, the event has raised over $160,000 to benefit the Parent Project Muscular Dystrophy (PPMD).

“It seems to grow year after year. It’s really an amazing community event. People come out with their kids and their parents. It’s a very uplifting, great day.”

Through the PPMD, the Johnsons have been able to connect with two other families with sons going through the same thing.

The McKeaneys, from Marlton, N.J., participated in the race this year as well as the Reidenbergs of Chadds Ford, whose son Jordan, attends Kennett Middle School.

Having a family close by and another kid close in age has proved to be helpful in so many ways.

“It’s nice to have a local family because my sons Elliott and Henry are good friends with Jordan,” Johnson said. “They have someone who understands it better than anybody. It’s neat because they share their connections not with just Duchenne, but with Star Wars and Legos as well. In the end, the boys are just like anybody else, but just trying to figure out what this means in their life.”

With the disease being so rare, it sometimes astounds Johnson to see such an outpouring from the community who is always willing to help, from students all the way up to elders.

A prime example of that would be Team Hillendale, who came out in huge support with students, parents and teachers combing for 125 runners.

“It equals just 100 percent hope,” Johnson said. “This is a rare disease so the more people that know about it, the better chances are that my sons will have a treatment and that we can change the trajectory of this disease. It means so much. People come up to me and tell me they’re happy to be here and happy to support the cause. It’s incredibly emotional for me.

“I hope the next time I advertise this (run), I can say the first drug for Duchenne muscular dystrophy has been approved. That’s my goal. I said in my thank you that I’ll keep doing this until there’s a cure. I hope that within the next couple of years, I’ll be able to say that our efforts have translated into drug treatments.”