Clinical Trials
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
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)
Diagnostic & Care
Do you think you have a form of Limb-Girdle Muscular Dystrophy (LGMD)? It is very important for you to get a genetically confirmed LGMD diagnosis. If your doctor tells you that you have an LGMD but doesn’t genetically confirm it, your diagnosis is incomplete. Knowing the exact form of LGMD or sub-type is important as there are health benefits for confirming an LGMD sub-type through genetic testing. Genetic testing can be performed with either a saliva or blood sample.
Have you received confirmation of your LGMD sub-type diagnosis? Please consider having your name entered into a diagnosis specific “LGMD Patient Registry”.
One of the challenges of living with a rare disease such as Limb Girdle Muscular Dystrophy (LGMD) is finding physicians and other health care specialists who have a good understanding of the disease process.
The National Organization of Rare Disorders (NORD) has designated 31 Rare Disease Centers of Excellence nationwide. Each center offers the high-quality specialized care needed to help diagnose and manage complex rare diseases. Collaboration between these institutions creates critical new connections and improves access to best-in-class clinical care and resources.
There are more than 30 known subypes (forms) of limb-girdle muscular dystrophy (LGMD). In 2017, the naming system (nomenclature) of LGMD was changed.
- Patient information leaflet on new names for LGMD (PDF Document)
- Summary of Evidence-based Guideline for PATIENTS and their FAMILIES
- Summary of Evidence-based Guideline for CLINICIANS
- Download the AAN Muscular Disease Guidelines “app” for through the iTunes Store or the Google Play Store
- Facts About LGMD – a publication from Muscular Dystrophy Association (MDA)
- LGMD Organizations/Foundations
- National Center for Biotechnology Information (NCBI)
- National Institute of Health (NIH)
- Muscular Dystrophy Association (MDA)
- Muscular Dystrophy Foundation Australia
- Muscular Dystrophy Canada
- Muscular Dystrophy New Zealand
- Muscular Dystrophy South Africa
- Muscular Dystrophy UK
- Treat-NMD: Neuromuscular Network
- Team Titin – LGMD2J and Titin Myopathy
Pharmaceutical / Biotech Websites:
Finance
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.
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
Patient & Family
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!
PLEASE NOTE: LGMD Awareness Foundation, Inc. strives to make the information on this website as timely and accurate as possible, we make no claims, promises, or guarantees about the accuracy, completeness, or adequacy of the contents of this site, and expressly disclaims liability for errors and omissions in the contents of this site. Reference in this site does not constitute endorsement or recommendation by LGMD Awareness Foundation, Inc.
