● Published by J. Chambless
In April, the community will come together for the sixth year to support families struggling with Duchenne muscular dystrophy. The Sixth Annual Unionville Run for our Sons, a 5K run or one-mile walk, is scheduled April 18 at 9 a.m., beginning and ending at the Charles F. Patton Middle School. Last year drew the largest number of participants yet, with more than 900 registered runners.
Registration is now open for the event, which benefits Parent Project Muscular Dystrophy and Happy 2 Be Home.
The race is held in honor of Elliott and Henry Johnson, who were diagnosed with Duchenne within a month of each other in 2007. In a note posted to the Unionville-Chadds Ford School District website on Feb. 17, their mother, Joanna Johnson, wrote, “When my husband and I started this part of our Duchenne journey, approached by [Patton Middle School] teacher Marcia DiGregorio, then a stranger, now a close friend, about planning a 5K, we had no idea where it would take us. We just knew that we needed to do something, anything, to change the face of this disease that would slowly rob our beautiful sons of their strength, independence and ultimately their lives. Doing something meant creating awareness and raising funds for research.
“We have accomplished more than we could have imagined in our wildest dreams,” Johnson continued. “Last year, we had our largest number yet. Over the last five years, we have raised over $250,000 for Parent Project Muscular Dystrophy to benefit research for treatments and a cure.
“Those are some impressive numbers for a relatively small community in Chester County. However, in some ways, it does not surprise me at all. I have seen this community reach out to those in need time and time again. I am humbled and honored that my family and our cause to end Duchenne has been embraced by the families, friends and staff of the Unionville-Chadds Ford School District.
“So we start again, with another lofty goal of $50,000 and only two months until race day. We need your support now, probably more than ever.”
Johnson, who is a Spanish teacher at Unionville High School, wrote that her young sons “are doing relatively well for their age for two boys with Duchenne. But there are the little things, or the big things, depending on how you look at it, that eat away at me. Elliott has lost the ability to get up from the floor independently. He cannot push out his chair at the kitchen table on his own. Yes, he is still ambulatory and can get around on his own, but these slow 'deaths' of his abilities crush us as parents.
“We know what is around the corner. We see too many of our friends with children with Duchenne struggle as their sons transition to full-time dependence on a power chair, need respiratory and cardiac support, and require full dependence on others for their daily activities.
“But time marches forward and I cannot afford to spend precious moments about what will or might be in the future.”
Parent Project Muscular Dystrophy (PPMD) is an organization founded by parents of sons with Duchenne. Since its founding in 1994, PPMD has invested more than $45 million into Duchenne research, which has leveraged over $500 million in additional funding.
Participants can run or walk at the event on April 18, create a team and set a fundraising goal, promote the event to others, or make a donation. Sponsors and donors are needed for the event's online auction, and volunteers are needed to help on the day of the race.
This year, part of the race day proceeds will go to Happy 2 Be Home, a local non-profit that works with families with chronically ill children to make medically necessary home renovations. They are partnering with the Johnson family as they plan to renovate their home to accommodate Elliott and Henry.
Contact Staff Writer John Chambless by e-mailing email@example.com.