In this session, Dr. Matt Wicklund and Dr. Nick Johnson from GRASP LGMD present in our plenary session at the conference. The Speak Foundation will post sessions from our conference regularly. Check back here to watch future sessions!
Let the patient voice be heard. Over 400 attended our first National Limb Girdle Muscular Dystrophy Conference to demonstrate to venture capitalists and biotechs that the LGMD patient community is robust, mobilized, and ready to aggressively advocate for effective treatments that are developed. The nation's leading neurologists in Limb Girdle Muscular Dystrophy were present along with major biotech companies on the cutting edge of emerging research. The goal of our first conference was to share information on treatments that are fast, effective, and safe for all forms of LGMD. Limb Girdle Muscular Dystrophy is a very serious, debilitating form of muscular dystrophy that primarily affects the muscle groups of the hips, arms, and legs. Many subtypes also affect cardiac and breathing muscles which may lead to premature death. Though forms vary, most individuals will use a wheelchair or mobility scooter eventually due to loss of ambulation.
Our conference unites everyone dealing with Limb Girdle Muscular Dystrophy so we can find safe, effective treatments fast. This conference is dedicated to bringing every patient into an active role seeking to find cures and treatments alongside doctors, biotech, and pharmaceutical companies. Our conference allows individuals to hear from the experts on new, emerging treatments.
Pictured above are a couple of our patients, including Donavon Decker, the first recipient of gene therapy targeted in a specific muscle group for LGMD.
Thank you to the GRASP LGMD consortium which is an international group of leading neurologists in the field of Limb Girdle Muscular Dystrophy research. GRASP researchers partner with the National LGMD Conference to further collaborative efforts across all subtypes of LGMD. Dr. Nick Johnson, pictured far right, leads the consortium with Dr. Matthew Wicklund.
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