Help Through Services and Support

MDA is committed to helping kids and adults with muscle-debilitating diseases live longer and grow stronger. We offer numerous services and resources in hometowns across America that provide care, support and guidance through every step of your journey.

Caregiver Resources

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 Articles 

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)

Related Guidebooks 

Learning to Live with Neuromuscular Disease: A Message for Parents

This message to parents includes topics such as the importance of reaching out, when family doesn't understand and more.

MDA ALS Caregiver’s Guide

Although the guide is specific to ALS, many of the tips and information shared are universal for all caregivers.

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.

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. 

BenefitsCheckUp

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

Caregiver information and advice available, along with online caregiver discussion group, and a directory of programs at the national, state and local levels.

Hospice Directory

Hospice provides extensive support to caregivers faced with end-of-life care of a loved one. Site includes a directory of hospice programs across the country, eligibility requirements and suggestions about how to choose a hospice program.

Hospice Net

Resources for patients, children and caregivers related to end-of-life care and bereavement.

Medicare Caregiving Resources

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

National Association of States United for Aging and Disabilities

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

National Caregivers Library

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.

Rosalynn Carter Institute for Caregiving Scholarships

Five $2,000 scholarships were awarded in 2015 through the Mattie J.T. Stepanek Caregiving Scholarship program.

Share the Care

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

Strength for Caring

Resources include a caregiver’s manual, state resource guide and an online caregiver community.

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.

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