Child Neurology Foundation will host its inaugural Los Angeles gala, A Heroes Dinner to honor John And Laurian Scott for trailblazing the path of discovery to rare disease gene. This young couple being tragically lost their two young children to a very rare neuromuscular disorder called Brown-Vialetto-Van Laere. The disease is so rare that less than 100 cases of BVVL have been documented in the last century. John and Laurian’s important work brought researchers together from across the globe, eventually leading to identification of the causative gene.
This research feat made it possible for the Scotts to conceive healthy twins and made this reality possible for other families. In 2011, their foundation funded Harvard researchers’ investigation into the mechanics of the disease, establishing the first embryonic stem cell lines for BVVL and progression into an animal model—groundbreaking advancements on path to a sustainable treatment, even potentially a cure, for a worldwide genetic killer.
There are over 400 known pediatric neurologic diseases. One in four US children lives with a neurologic diagnosis. Yet, there is only one child neurologist for every 10,000 children diagnosed. Proceeds from A Heroes Dinner will support CNF’s ongoing mission in action and the establishment of an annual Foundation Award, offering early support to a rising star in child neurology who is committed to research—etiology, treatment, healthcare policy—in child neurological disease.
The event features a silent auction, dinner, tribute program and performance by guitar virtuoso Billy McLaughlin, whose personal story cuts close to the heart of the cause. In 1999, he developed rare neuromuscular disorder Focal Dystonia, which affected use of his right hand, sidelining his career as a guitarist. He persevered to re-learn the instrument left handed-a remarkable comeback and the subject of award-winning documentary Changing Keys – Billy McLaughlin and the Mysteries of Dystonia. McLaughlin also possesses unique insight into the child neurology community as the parent to a son living with severe epilepsy. Award-winning actress Wendie Malick of TV Land’s hit series Hot in Cleveland will serve as emcee for the evening’s festivities.
A Heroes Dinner has been generously sponsored by Eisai, Inc., The Pediatric Epilepsy Research Foundation, Division of Pediatric Neurology at Mattel Children’s Hospital and the David Geffen School of Medicine at UCLA, Upsher-Smith Laboratories, Penn State Hershey Children’s Hospital, Mallinckrodt Pharmaceuticals: Autoimmune and Rare Diseases Business, and Children’s Hospital of Orange County.
WHEN: Saturday, November 8, 2014
6 p.m. – Reception & Silent Auction
7 p.m. – Dinner & Program
300 S. Doheny Dr.
Los Angeles, CA 90048
Please click here to purchase tickets.