COVID-19 Resources for the LGMD2A/R1 Community

Like many across the world, we at C3 are staying home to protect ourselves and others during the COVID-19 pandemic. While working from home, we continue to advance our mission of supporting research to find a cure for LGMD2A/R1.

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The World Muscle Society has published recommendations related to COVID-19 for people with neuromuscular disorders.

The Speak Foundation has posted advocacy letters and an emergency preparedness checklist for individuals with LGMD.

The COVID-19 Pandemic has caused financial hardship for many individuals and families. Below is a list of organizations that are offering various financial assistance to individuals with LGMD and their families. Eligibility criteria and deadlines vary per program.

•  Living in the Light of Rare Diseases – The I Stay Home For Rare Fund is currently available in the USA in amounts ranging from $500-$2,500, based on financial need.

• Laughing At My Nightmare – The COVID-19 Resource Relief (CRR) program provides financial assistance to individuals living with any disability, diagnosis, or chronic illness to help alleviate the burden of the coronavirus-related quarantines and social distancing practices. This assistance is provided in the form of one $100 Visa Gift Card to be used for food, hygiene products, and other living expenses associated with self-isolation and quarantine.

• National Organization for Rare Disorders (NORD) – the NORD COVID-19 Critical Relief Program will provide up to $1,000 annually to those eligible to support critical, non-medical needs. Contact: 203.242.0497 or Email: COVID19assistance@rarediseases.org

• NMD United – Any adult living with a neuromuscular disability is eligible to apply for and receive an ALEF Grant. This organization generously offers a variety of small grants to help offset some of the hidden costs of a disability that individuals living on a fixed income or low wages are forced to pay in order to maintain their independence. 

• The Speak Foundation – The Speak Foundation’s COVID-19 Disaster Relief Program is funded for individuals and families living with Limb Girdle Muscular Dystrophy in the USA.

A list of COVID-19-related resources can be found at LGMD-Info.com