The accomplishments of Ryan’s Quest to Fight Duchenne Muscular Dystrophy were the focus at the group’s annual Valentine Ball “Beyond the Stars” Saturday, as Rep. Chris Smith (R-NJ) joined a crowd of 600 people to honor a decade of work by David and Maria Schultz and their supporters to bring attention, funding and hope to the fight against Duchenne’s Muscular Dystrophy (DMD) with which their son is diagnosed.

     The indisputable star of the evening was Ryan Schultz, now 12, who has defied the odds of a muscular disorder that—his parents were told at the outset more than a decade ago—would rob him of his ability to walk.  With a beaming smile, he strode unassisted through the room next to his younger brother amid a booming chorus of cheers and music.  His favorite song “I’m Still Standing” was a theme throughout the evening, which was emceed by NJ101.5 host Bill Spadea.

     Ryan’s Quest selected Smith as its 2018 recipient of the “Ryan’s Hero Award” for his work on DMD. The award, which bore the inscription “in recognition of your continued support for those living with Duchenne Muscular Dystrophy,” was presented to Smith at the gala.

     In presenting Congressman Smith with the award, David Shultz recounted Smith’s years of supporting Ryan’s Quest’s work with legislative and funding initiatives, as well as communications with the U.S. Food and Drug Administration.

     “His dedication and special attention to rare disease reform is outstanding,” Schultz said. “Tonight I proudly present the Ryan’s Hero Award to United States Congressman Christopher Smith.”

     Smith told the Schultz family he was humbled by the award, and told them that Ryan’s Quest is “making a difference,” citing the group’s distribution of $2.4 million-plus for funding research.

     DMD is a progressive muscle disorder that affects boys, causing a loss of both muscle function and independence. DMD affects approximately 1 out every 3,500 boys born worldwide, or about 20,000 each year. Nearly all boys with DMD die by their late teens or early 20s from respiratory and/or cardiac complications. DMD has a 100 percent fatality rate, and is typically diagnosed in boys between the ages of 3 and 7, who generally lose their ability to walk between the ages of 8 and 12. Sadly, there is no known way to stop the progression of DMD, and no cure.

     “Ryan likes to say that each day is awesome,” Smith told the crowd. “I would say tonight Ryan and his family are truly awesome and define courage.”

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