Race to fund research on genetic disorder

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‘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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