COVID-19 Financial Assistance

LGMD Awareness Day Toolkit

The LGMD Awareness Foundation is on a mission to shine a global spotlight on limb-girdle muscular dystrophy (LGMD) and champion the cause for improved access to diagnosis, care, and treatment for those living with this condition. As we celebrate a decade of progress, we will be rolling out an Awareness Day Toolkit in spring of 2024, designed to empower and engage our community in advocacy like never before.

LGMD Awareness Day Toolkit

Spotlights

Explore our ‘Spotlights’ section, where we shine a light on the inspiring stories and invaluable contributions of individuals with LGMD, their dedicated caregivers, supporting organizations, and the clinicians who support them.

COVID-19 Financial Assistance Programs Available To Assist The LGMD Community

This is by no means a complete list. Resources do change without notice. We try our best to keep the list accurate and up-to-date. We hope that as you learn of new resources, you will send them to us at info@lgmd-info.org so that we can share them with the LGMD community.

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 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.