Resources

Clinical Trials and Natural History Studies are vital for advancing research to help find a treatment and cure for LGMD

•  ClinicalTrials.gov – This is a searchable registry and results database of federally and privately supported clinical trials conducted in the United States and around the world.
• Biotech and Pharmaceutical Companies
  • AskBio 
  • Atamyo Therapeutics
  • Genethon
  • ML Bio Solutions
  • Sarepta Therapeutics
  • Vita Therapeutics

Patients can empower themselves by investigating whether or not a treatment has been published and proven to be safe and effective.   For the health & safety of the LGMD patient, it is extremely important to determine whether a treatment is legitimate!

• 5 Question “Checklist” (PDF Document)

Living with a progressive neuromuscular disease such as Limb Girdle Muscular Dystrophy can be financially challenging at times.  There are many disability related costs that public and private insurance do not typically cover.  Below are some resources that may be able to provide assistance to help offset the financial burden.

• Links to organizations offering grant opportunities

Individuals with  Muscular Dystrophy (MD), often face daily challenges in performing essential tasks, including activities in your personal life as well as job functions. If your MD prevents you from earning a living through gainful employment, then you can potentially qualify for disability benefits from the Social Security Administration (SSA).

• SSI Child Disability Starter Kit Factsheet and Checklist from the Social Security Administration
• SSI Adult Disability Starter Kit Factsheet and Checklist from the Social Security Administration
• Social Security Administration’s Benefits Eligibility Screening Tool (BEST) The BEST tool helps you find out if you could get benefits that Social Security administers. Based on your answers to questions, this tool will list benefits for which you might be eligible and tell you more information about how to qualify and apply.
• Social Security Administration Red Book A summary guide to employment supports for persons with disabilities under the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs
• Social Security definition of disability —Musculoskeletal disorders page Used as a basis to determine eligibility for state insurance benefits
• Social Security definition of disability —Childhood Listings Used as a basis to determine eligibility for state insurance benefits
• Social Security Ticket to Work Program  supports career development for Social Security disability beneficiaries age 18 through 64 who want to work.
• Ultimate Guide to Social Security Disability Benefits Blog from MoneySavingPro.com as a guide to Social Security Disability benefits
• Understanding Supplemental Security Income Appeals Process Information from the Social Security Administration

• Links to more that 65 LGMD related Facebook Groups
• Blogs, Podcasts and YouTube Channels

In 2021, The Speak Foundation began publishing LGMD News, a quarterly magazine focused on limb-girdle muscular dystrophy.  To learn more and sign up for this free publication, please visit The Speak Foundation website.

Getting a proper wheelchair is so important for enhancing your function, maintaining comfort and improving your independence. It is a big decision…so you want to be well informed throughout the entire process.

• “Mobility Map” – an online step by step guide on how to get “The Right Wheelchair” for your specific needs!