July 7, 2011 Pittsburgh, Penn. — Little Silas Werner has been diagnosed with SMARD (spinal muscular atrophy with respiratory distress), a rare, life-threatening motor neuron disorder that affects infants and children. Silas’ parents, friends and supporters are hosting a wine reception to benefit SMARD research at The Jackson Laboratory on Saturday, Oct. 8, 7-10 p.m. at Engine House 25.
Silas Werner baffled a small army of Pittsburgh pediatric specialists before he was diagnosed with SMARD three months after his birth. His diagnosis followed the passing of his sister, Valentia, whose death was labeled as sudden infant death syndrome (SIDS), despite the absence of risk factors. Subsequent study confirmed that Valentia also had SMARD. Silas, now almost two years old, is living against all odds.
His parents, Lisa and John Werner, are part of the close network of SMARD parents who now have newfound hope for the future. They recently learned that The Jackson Laboratory has a laboratory making strides in SMARD research. They now are doing everything they can to help make SMARD a priority at The Jackson Laboratory by raising funds to advance the research—work that could possibly help Silas and his peers.
Jackson Laboratory Associate Professor Greg Cox, Ph.D., who will be the event’s keynote speaker, is searching for genetic clues that can make a difference for children like Silas, but due to current low levels of federal funding for this particular disorder, his lab currently spends only 5 percent of its time on SMARD research. “New funding from events like Sip, Sip, Soirée for Silas! will change that,” Cox says. “With enough funding for additional staff to devote to this cause, some significant findings are possible.”
Engine House 25 is located at 3339 Penn Avenue, Pittsburgh. Ticket prices are $100 per person, or $175 per couple. All funds generated from this event will be designated solely for SMARD research at The Jackson Laboratory. For more details, contact Suzan Backer at 207-288-6879.
The Jackson Laboratory is a nonprofit biomedical research institution based in Bar Harbor, Maine. Its mission is to discover the genetic basis for preventing, treating and curing human diseases, and to enable research and education for the global biomedical community.
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