Keynote Address: Game Changer: A Boy, a Dog, and a Cure

Wednesday, March 21
8:10 AM - 9:00 AM
Location: Regency Ballroom

Martin (Casey) K. Childers, DO, PhD

Professor, Department of Rehabilitation Medicine; Co-Director, Institute for Stem Cell and Regenerative Medicine, University of Washington

Martin K. (Casey) Childers, DO, PhD, is a professor in the Department of Rehabilitation Medicine, and co-director of the Institute for Stem Cell and Regenerative Medicine at the University of Washington. He is a graduate of Seattle Pacific University (BA, music performance), Western University (DO, medicine, osteopathic), and the University of Missouri (PhD, physiology and pharmacology; residency, rehabilitation medicine). The Childers' Laboratory works in two areas of investigation: in preclinical studies, they address issues related to systemic gene replacement delivery for patients with rare neuromuscular diseases, such as X-Linked Myotubular Myopathy and, in other studies, they use a "disease in a dish" approach with induced pluripotent stem cells to study heart disease in patients with Duchenne muscular dystrophy. Dr. Childers' clinical medicine practice at the University of Washington Medical Center is dedicated to serve patients with neuromuscular diseases.

Presentation(s):

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Alison Rockett Frase

President
Joshua Frase Foundation

Alison Rockett Frase is the president of the Joshua Frase Foundation. Once the assistant personnel manager for a leading rock and roll band, she is now the driving force behind this organization. In 1995, Ms. Frase gave birth to her son, Joshua—a baby so weak, he could only move his right hand. The doctors said he wouldn’t survive the day and, from that moment, Ms. Frase became Joshua’s advocate and, in 1996, together with her husband, she created the Joshua Frase Foundation. Since that time, Ms. Frase has helped raise nearly $7 million to fund medical research, search for a cure, and raise awareness of neuromuscular-related disorders. As president of the Foundation, Ms. Frase assumes the role of patient advocate, marketer, public relations manager, event planner, and administrator. In addition to raising funds for medical research and building an increased awareness of neuromuscular disorders in children, she has created a network support system for affected families and clinicians dealing with neuromuscular disorders. Through this network and her website, she is able to reach out to other families worldwide who deal with the day-to-day care needed to enhance the lives of these children, provides resources and information pertinent to the disease, and options and strategies to overcome the unique challenges these disorders can present. It is important to note that Ms. Frase did all of this while caring for her son, who required 24-hour care. Today, she continues her work in memory of her son, who passed away on Christmas Eve, 2010. Her passion has shifted from finding a cure for her son to finding a cure for other children affected with this disorder, so no parent has to suffer what she now faces every day—the blinding pain of losing a child. In 2015, Ms. Frase was awarded the RARE Champion of Hope Advocacy Award by Global Genes. She launched the international Family Registry for Centronuclear and Myotubular Myopathies in 2012 (this registry is now a member of the NIH/National Center for Advancing Translational Science Global Rare Diseases Registry Data Repository® program), and she is serving on the access to data committee as a patient advocacy representative.

Presentation(s):

Send Email for Alison Rockett Frase


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