Start with what you may need now
Common needs include insurance and benefits, equipment, home accessibility, transportation, travel for specialty care, treatment and medication expenses, legal documents, and emergency financial needs.
You do not have to figure this out all at once
- Take the next small step.
- Keep good records and ask for help.
- You are not alone—support is available.
Equipment & Accessibility
Get the equipment and home or daily living supports that help your child stay safe, comfortable, and independent.
Accessible Vehicles & Home Modifications
Modify vehicles and homes to improve safety, mobility, and day-to-day independence.
Travel Assistance
Find help with the cost of travel for specialty care, clinical trials, and follow-up visits.
Medication & Medical Costs
Manage the cost of prescriptions, treatments, and medical care.
- Medicaid (state authorizations & appeals) — Medicaid.gov (opens in a new tab)
- Manufacturer assistance programs — NeedyMeds (opens in a new tab)
- Copay assistance foundations — HealthWell Foundation (opens in a new tab)
- 340B hospital programs — Health Resources & Services Administration (opens in a new tab)
Emergency Financial Support
Find help during financial hardship, unexpected expenses, or urgent needs.
- Local emergency assistance programs — 211 (opens in a new tab)
- Utility & rent assistance — U.S. Administration for Children and Families (LIHEAP) (opens in a new tab)
- Food & transportation support — USDA Food and Nutrition Service (SNAP) (opens in a new tab)
- Community & faith-based aid — United Way (opens in a new tab)
Wishes, Experiences & Creating Memories
Plan meaningful experiences and create lasting memories as a family.
- Memory-making grants — Make-A-Wish America (opens in a new tab)
- Adaptive recreation programs — Move United (opens in a new tab)
- Family respite & supportive programs — ARCH National Respite Network (opens in a new tab)
- Community & nonprofit resources — Parent Project Muscular Dystrophy (opens in a new tab)
Benefits & Insurance
These programs can help reduce costs and provide essential support.
Eligibility rules vary by state and program. Ask a social worker, benefits counselor, or legal aid advocate for help applying.
Legal Planning
Putting legal protections in place helps ensure your child’s future is secure.
Consult an attorney experienced in disability and special needs planning.
What to keep organized
Finding local help
Start with these local resources in your community.
What We Wish
Someone Had Told Us
Honest advice and lessons learned from
Duchenne families who’ve been there.
You don’t have to have all the answers today. You just have to take the next step.
One day, you’ll look back and see how far you’ve come.
Childhood is full of laughter, curiosity, adventures, and connection. Hold on to those moments. They matter just as much as the medical ones.
There is no “right” way to do this. You will figure out what works best for your child, your family, and your life.
You are stronger than you know, and you are not alone.
— From parents who have walked this road before you.
Looking for more
local support?
Connect with resources in your area, including financial, legal, and community assistance.