Child Neurology Foundation Hosts Inaugural Los Angeles Gala - A Heroes Dinner - Honoring John And Laurian Scott For Trailblazing The Path Of Discovery To Rare Disease Gene

LOS ANGELES, Oct. 2, 2014 /PRNewswire-USNewswire/ -- Child Neurology Foundation (CNF), a national nonprofit organization that works through advocacy, research and educational initiatives to ensure optimal care for all children living with a neurologic disease, will host a gala fundraiser, A Heroes Dinner, on Saturday, November 8th, 2014, at the Four Seasons Hotel in Los Angeles. Parent advocates John and Laurian Scott will be honored with the inaugural John & Laurian Scott Hero of Promise Award, recognizing their extraordinary contribution to pediatric neurology.  More than 250 guests will attend, including child neurologists and medical researchers from across the country, parent advocates, business leaders, and celebrities.

John and Laurian Scott know the reality of caring for a child with a neurologic disease. The Scotts lost their two young children, Thisbe and Noah, to a rare neuromuscular disorder—Brown-Vialetto-Van Laere (BVVL). Through the establishment of the Thisbe & Noah Scott Foundation (TNSF) and its project BVVL International, the Scotts were instrumental in coalescing researchers from across the globe to identify the causative gene. This research also granted the Scotts the ability to conceive healthy twins and made that reality possible for other families. In 2011, TNSF 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 the path to a sustainable treatment, or potential cure, for a genetic killer.  

"John and Laurian are honored and humbled to accept this parent advocacy award from CNF. They are especially grateful to neurology researchers who persisted in identifying the gene, giving hope to all families affected by this disease," said Lindsay Ballew, Executive Director, Thisbe & Noah Scott Foundation.  

"CNF is delighted to present our Hero Of Promise Award to John and Laurian Scott—passionately dedicated parents who are our true partners in care," said CNF Board President Dr. W. Donald Shields. "Only together may we create a robust child neurology community positioned to serve the unique needs of these children and families."

There are over 400 known pediatric neurologic diseases. One in four US children lives with a neurologic diagnosis. There is only one child neurologist for every 10,000 children diagnosed. Proceeds from A Heroes Dinner will support CNF's ongoing mission and the establishment of an annual Foundation Award, offering early support to a rising star committed to research—etiology, treatment, health care policy—in childhood 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.

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.

SOURCE Child Neurology Foundation (CNF)