Bringing Individuals with LGMD Together

Individuals with Limb Girdle Muscular Dystrophy are able to meet others who are dealing with the same life challenges at the National LGMD Conference. The importance of community building matters as we hopefully wait for treatments that are on the horizon. Together we are stronger!

Over 400 attendees were present for the first National Limb Girdle Muscular Dystrophy Conference!

the 2019 national lgmd conference was a huge success!

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.   The most amazing treatments are on the horizon for LGMD.  One of the newest treatments on the horizon is gene therapy which is currently going into Phase 2 out of Nationwide Children's Hospital for LGMD 2E.  There are many gene therapies currently in development with other companies and the National LGMD Conference is an important part of highlighting these emerging treatments. 

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.   


All information is confidential and is not shared with any organization or company.   Our registry is patient led which means that patients own their own data versus a company owning the rights to your data.  Protecting the patient voice by joining our registry helps to maintain a registry not tied to any company.    

Feel free to also join our social community on facebook. 

for direct patient interaction.   

The National Limb Girdle Muscular Dystrophy Conference 

is a project and program of the Speak Foundation. 

The Speak Foundation is the legal entity 

for  the National LGMD Conference.  

National Limb Girdle Muscular Dystrophy Conference


Patients and Families

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.   


Top Research from Leading Stakeholders

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.