Race to fund research on genetic disorder

‘Run For Our Sons’ to benefit childhood victims of Duchenne muscular dystrophy

"Run For Our Sons"

“Run For Our Sons 5K and Family Fun Days,” a benefit for childhood victims of Duchenne muscular dystrophy, will be held Saturday.

The devastating news came in 2007 when a couple’s first son, now 9, was diagnosed with Duchenne muscular dystrophy, the most common fatal genetic disorder diagnosed in childhood. The disease affects approximately one in every 3,500 live male births – about 20,000 new cases each year.

Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures. For the Johnson family, the news went from heartbreaking to more so when they learned a short time later that their second son, now 6, also had Duchenne.

Since then, Paul and Joanna Johnson, a teacher at Unionville High, have fought back, organizing Run For Our Sons 5K and Family Fun Days, which has so far raised over $160,000 to benefit Parent Project Muscular Dystrophy (PPMD). Founded by like-minded parents, PPMD is helping to fund research that will lead to treatment or a cure, ultimately giving children afflicted with Duchenne a future.

This year’s race will be held Saturday. It will start at 9 a.m. at C.F. Patton Middle School; registration is at 8 a.m. Door prizes, raffles and refreshments will be available. Another plus: Race participants will get a discount off a family entrance ticket for Saturday night’s Annual United Way / UCFSD Family Pasta Dinner.

For more information, visit http://www.parentprojectmd.org.

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