US FDA Grants Expanded Approval of ELEVIDYS Gene Therapy for DMD Patients Ages 4 and Above

Innovations in Care

We provide access to support and programs that empower the lives of people living with neuromuscular diseases.

Resources for Caregivers

MDA honors family caregivers for their tireless support and dedication during National Family Caregivers Month in November and all year-round. It’s through your devotion and commitment that our MDA families receive the care and attention they need. From MDA, we say THANK YOU for all you do to help support and empower children and adults living with muscular dystrophy, ALS and related life-threatening diseases.

Related Guidebooks 

Duchenne Guide for Families

The Duchenne Guide for Families is a practical roadmap for those living with DMD and their families. The guide provides readers the information they need to understand Duchenne and the many considerations that are a part of living with this disease.

MDA Guide for Caregivers

Tips and information for caregivers of an individual with a neuromuscular disease.

A Teachers Guide to Neuromuscular Disease

An excellent resource for teachers who have students with neuromuscular diseases, and a helpful guide for parents navigating educational advocacy issues.

Related Articles 

Forbes Magazine article outlining financial options for providing for an adult or child living with a disability. To read more, follow this link.

Caregiver Burnout: Symptoms and How to Avoid Them

Caregiving: Choosing with Care (October 2017)

The Heart of Care (October 2016)

My Brother's (or Sister's) Keeper (October 2015)

Caring for the Caregivers (October 2014)

Walking the Line Between Caregiver and Life Partner (November 2013)

More online resources 

Here is a listing of national online resources to help you and your caregiver as you move forward in your journey with muscular dystrophy, ALS and related muscle-debilitating diseases. 


Identifies programs to help pay for prescription drugs, food and health care.

Caregiver Resource Network

Caregiver stories, respite care information, caregiver health and wellness, and a listing of links to other online resources for caregivers.

Family Caregiver Alliance

The Medicare site provides a caregiver-specific section, offering a caregiver’s guide, assistance with billing and navigating Medicare, and other care options.

Eldercare Locator

Provides a state listing of Aging Resource offices that offer local assistance to caregivers.

Offers articles relating to legal matters, housing and transportation issues, end-of-life decisions, care facilities and more.

National Family Caregivers Association

Site includes news and resources to support and educate caregivers.

National Respite Network

Use the locator tool to find state and local respite services.

Share the Care

The original model for organizing and maintaining a volunteer caregiving group.

Today’s Caregiver

A digital magazine, resources and caregiver discussion forum.

Well Spouse Association

Support groups, online discussion forums, recommended reading list for caregivers, resource guide and online mentor program.