Innovations in Care
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.
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.
Tips and information for caregivers of an individual with a neuromuscular disease.
This message to parents includes topics such as the importance of reaching out, when family doesn't understand and more.
Although the guide is specific to ALS, many of the tips and information shared are universal for all caregivers.
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.
Identifies programs to help pay for prescription drugs, food and health care.
Caregiver stories, respite care information, caregiver health and wellness, and a listing of links to other online resources for caregivers.
Caregiver information and advice available, along with online caregiver discussion group, and a directory of programs at the national, state and local levels.
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.
Resources for patients, children and caregivers related to end-of-life care and bereavement.
The Medicare site provides a caregiver-specific section, offering a caregiver’s guide, assistance with billing and navigating Medicare, and other care options.
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.
Site includes news and resources to support and educate caregivers.
Use the locator tool to find state and local respite services.
Five $2,000 scholarships were awarded in 2015 through the Mattie J.T. Stepanek Caregiving Scholarship program.
The original model for organizing and maintaining a volunteer caregiving group.
Resources include a caregiver’s manual, state resource guide and an online caregiver community.
A digital magazine, resources and caregiver discussion forum.
Best in class home respiratory care.
Support groups, online discussion forums, recommended reading list for caregivers, resource guide and online mentor program.
- MDA Care Centers
- MDA Resource Center
- MDA Summer Camp
- Medical Education for Health Care Providers