SMARD research gifts
Thank you to those who have made generous gifts to advance SMARD research.
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Sip, Sip, Soirée for Silas!
Saturday, October 8, 2011
Engine House 25 (map)
3339 Penn Avenue, Pittsburgh, PA 15201
Join us for a wine reception at Engine House 25, a beautifully renovated urban-chic firehouse. Guests will hear from Dr. Greg Cox of The Jackson Laboratory, one of the few researchers in the world studying SMARD, and tour the private wine cellar and Roberto Clemente collection. All proceeds of the event will benefit SMARD research at The Jackson Laboratory.
Please register online or by phone at 1-866-393-0518. 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.
If you are unable to attend the event but would like to support SMARD research, please use our secure online form or review other ways to give by phone, mail and more. Please reference “Sip for Silas and SMARD research” when making your gift.
Silas and SMARD
Silas Werner baffled a small army of Pittsburgh pediatric specialists before he was diagnosed with SMARD (spinal muscular atrophy with respiratory distress) three months after his birth. His parents, Lisa and John, were devastated. SMARD is a rare, life-threatening motor neuron disorder that affects infants and children.
The horrifying news of Silas’ diagnosis came after the passing of their first child, Valentia, whose death was labeled as sudden infant death syndrome (SIDS), despite the absence of risk factors. When Silas was later diagnosed with SMARD, further investigation confirmed that she also had SMARD. Silas, now almost two years old, is living against all odds. Despite his condition, Silas radiates joy and makes life incredibly rich for his family.
Lisa and John 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.
Gregory A. Cox, Ph.D., Associate Professor, The Jackson Laboratory
Dr. Cox 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 five percent of its time on SMARD research. New funding from events like Sip, Sip, Soirée for Silas! will change that. With enough funding for additional staff to devote to this cause, he believes that some significant findings can be made in the near future.