7th Run for Our Sons takes aim at Duchenne

 On Saturday, April 16, racers will converge at Charles F. Patton Middle School, making a mad dash to help find a cure for Duchenne muscular dystrophy (DMD).

The 2016 Race for Our Sons will benefit

The 2016 Race for Our Sons will benefit the Parent Project Muscular Dystrophy.

The Seventh Annual Unionville Run for Our Sons will raise funds to research treatments for this debilitating disease that affects approximately one in every 3,500 boys born each year. The disease is the result of a mutation of a gene on the X chromosome, and primarily affects men.

Parent Project Muscular Dystrophy (PPMD), an organization focused on raising awareness and funding research of muscular dystrophy, began its Run For Our Sons program in 2005. Since then, the program has expanded, and branches have opened in cities and towns all over the country.

DMD causes a progressive decrease in strength, which can contribute to many medical problems (especially those affecting the heart and lungs). Many affected by Duchenne live only into their late 20s, according to the PPMD website.

Runners get ready to take off during the 2015 race.

Runners get ready to take off during the 2015 version of Run for Our Sons.

A local couple, Joanna and Paul Johnson, became involved with PPMD after their sons, Henry and Elliot, were diagnosed with the disease in 2007. Joanna Johnson teaches Spanish at Unionville High School, and a letter on the Johnsons’ Run for Our Sons website explains the genesis of the local race.

“The days and months that followed [the diagnoses] were the darkest days we experienced as parents as we came to grips with the fact that our two beautiful boys would become progressively weaker over time and most likely not live beyond the age of 30,” they wrote. “Worst of all, there was no treatment or cure that would change the outcome. However, we refused to believe that nothing could be done and started researching to learn all that we could about the disease.”

In the six years since the race’s beginnings in Unionville, over $300,000 has been raised for PPMD to support Duchenne research. The Johnson boys have been a part of a clinical trial for a drug called Ataluren, which is reaching the final stages toward getting FDA approval.

AJ Sandor, 16, Elliott Johnson, 12, and Jordan Reidenberg, 14, are among the children hoping to benefit from advances in treatment for Duchenne.

AJ Sandor, 16, Elliott Johnson, 12, and Jordan Reidenberg, 14, are among the children hoping to benefit from advances in treatment for Duchenne.

“For the last few years, I have dreamed of starting this letter by saying, ‘Congratulations! Our hard work has paid off as the first treatment for Duchenne muscular dystrophy has been approved by the FDA,’” the letter said. “We are that close, but still have yet to cross the finish line … However, this battle is a marathon and we are only at the beginning stages.  FDA approval of Ataluren would be a victory, but we need to take that momentum and keep it going.”

The treatment will only benefit 15 percent of the boys with Duchenne.  “That is simply not good enough,” the letter said. “We will not stop until every boy, every single one, has a viable treatment.”

Joanna Johnson said it is hard to believe that the seventh race is a week away. “My husband and I never could have dreamed how successful this event would become when we first thought about having a local run,” she said.  “Every year when we watch the runners take off, we are overcome with emotion.  The way that this community comes together to support our cause to end Duchenne means the world to us.  It gives us the strength to keep fighting against this devastating disease.”

She said she and her husband have formed close relationships with other families fighting DMD and share the pain of watching their sons grow weaker. “This is why we are so committed to Parent Project Muscular Dystrophy and donate all funds raised to them every year,” Johnson said.  “They have completely changed the landscape of this disease and have given hope to families like us.”

Last year’s race had over 900 runners registered, Unionville’s largest turnout yet.

The race will begin and end at Charles F. Patton Middle School, proceeding through the rolling hills of two residential neighborhoods. Runners can register for $30 ($25 for students).

In addition to the race itself, there will be raffles, family fun activities, and refreshments for all who attend. The race begins at 9 a.m. on Saturday, April 16, with on-site registration starting at 8 a.m. For more information, click here.

 

 

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About Morgan Carter

Morgan Carter is a creative writing student interning with Chadds Ford Live. She loves tea, long walks on beaches, and baking – provided there is a recipe on the back of the box. She lives in Chadds Ford with her parents, three siblings, and two spunky parakeets. Morgan is very excited to be a part of the Chadds Ford Live team, and hopes to pursue a career in writing after graduating from college.

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