The Speak Foundation is so glad you want to be a part of advocacy initiatives for the LGMD community!
The virtual FDA Listening Session on Limb Girdle Muscular Dystrophies was held October 20, 2020. This was a patient-led listening session organized by a group of advocacy organizations focused on various aspects and genetic subtypes of LGMD. Fifteen presenters, all patients or family members representing twelve different LGMD subtypes, gave presentations in a webinar format which included personal narratives, slide presentations, and videos. Download the full summary to read all that was shared by individuals living with LGMD.
The LGMD Listening Session was planned and organized by a consortium of advocacy organizations, focused either on raising awareness or assisting patients living with LGMD and related neuromuscular diseases, or on achieving clinical trial readiness and developing treatments for particular genetic subtypes of LGMD.
● The Speak Foundation (uniting all forms of LGMD)
● Coalition to Cure Calpain-3 (focused on LGMD2A/R1)
● Jain Foundation (focused of LGMD2B/R2)
● Team Titin (Focused on LGMD2J/R10)
● Kurt+Peter Foundation (focused on LGMD2C/R5)
● LGMD Awareness Foundation
● CureLGMD2i Foundation
● Beyond Labels and Limitations
● Breathe with MD
● Camron’s Cure (focused on LGMD2S/R18)
● LGMD2L Foundation
● LGMD1D/D1 DNAB6 Foundation
The Speak Foundation is a 501c3 which means all donations are tax deductible. We are the oldest charity in the muscular dystrophy world that is patient led and patient run by individuals living with LGMD.
Sign up to be included in the Limb Girdle Muscular Dystrophy Patient Network where you will receive cutting edge research updates from the leading experts in the world such as the GRASP LGMD consortium and also be invited to hear about new clinical trials. When you sign up here, you will also receive the free LGMD News Magazine if you live in the USA. Anyone can join the LGMD Patient Network.