The National Limb Girdle Muscular Dystrophy Conference is a program and project of the Speak Foundation - a registered 501c3 since 2008. The Speak Foundation also offers a free yearly conference during the summer for all forms of muscular dystrophy and physical disabilities in Atlanta, Ga.
Kathryn serves as our Conference Administrator and is also the CEO and National Director of the Speak Foundation, a registered 501c3 since 2008. The Speak Foundation serves also as the organizational sponsor for the National Limb Girdle Muscular Dystrophy Conference. Founded in 2008, Speak Foundation is the first patient run nonprofit dedicated to improving the lives of those living with neuromuscular diseases, Kathryn experienced rhabdo multiple times as a child, was diagnosed with muscular dystrophy, and later officially given a diagnosis of LGMD2i (dystroglycanopathy). Kathryn is an honors graduate of the University of Virginia and also a recipient of multiple academic and professional awards. She graduated with a dual Master's from Southwestern Seminary. Speak Foundation also sponsors a patient and family respite conference for all forms of muscular dystrophy in Atlanta, GA every year. Find out more at www.thespeakfoundation.com/conference.
Brad serves as the Chairman of our National Conference. He earned Bachelor’s degrees in Physics and French from Stanford University, and his Ph.D. in Applied Physics from Cornell University. He began to have symptoms of dysferlinopathy (LGMD2B/Miyoshi distal myopathy) as he was starting college. Brad worked for many years as a physicist at the Naval Research Laboratory in Washington, DC, before moving to Seattle and joining the Jain Foundation full-time to work on dysferlinopathy. He is also a self-taught expert on dysferlinopathy and has a long history of involvement in the dysferlin field. He created the first website about dysferlin deficiency in 2001, and is active in the online patient community, is a member of the Patient Advisory Board for Myonexus Therapeutics, and has given numerous presentations at scientific and patient conferences.
Carol serves as the Vice-Chairwoman of our National Conference. She is the founder and coordinator of “Limb Girdle Muscular Dystrophy Awareness Day” which is celebrated annually on September 30th worldwide. Carol is also the Director of Community Outreach for Coalition to Cure Calpain3, an organization focused on finding a cure and treatment for LGMD2A (also known as Calpainopathy).
Carol has lived with a diagnosis of LGMD2A/Calpainopathy since her childhood and is very involved with the LGMD community worldwide. She is a graduate of Mount Mary University where she graduated with a BS in Occupational Therapy and worked as a Registered Occupational Therapist (OTR) for many years. Carol was also crowned Ms. Wheelchair Wisconsin 2016 and has a long history of being an advocate for individuals with disabilities.