Finding Help When You Need It
One of the biggest surprises for many families after a Duchenne diagnosis is realizing that the cost of living with Duchenne extends far beyond doctor's appointments.
- Equipment.
- Travel.
- Wheelchairs.
- Accessible vehicles.
- Home modifications.
- Hotels.
- Lost time at work.
These expenses can add up quickly, and no family should feel like they have to carry them alone.
The good news is that there is an incredible network of nonprofit organizations around the world dedicated to helping families living with Duchenne.
Some provide grants.
Some help purchase equipment.
Some help families travel to expert clinics or clinical trials.
Some make once-in-a-lifetime experiences possible.
Others simply help during difficult seasons.
You don't need to know every organization today. You simply need to know that help exists.
Below, each section lists organizations primarily serving the United States, with drop-downs for Canada, the United Kingdom, Australia, and Europe. Open the country closest to you for region-specific support.
Equipment & Accessibility
Many of the items people with Duchenne need aren't fully covered by insurance—or aren't covered at all.
Organizations around the world help families obtain equipment that improves safety, comfort, independence, and quality of life.
Examples include:
- Power wheelchairs
- Standing devices
- Hoyer lifts
- Stair lifts
- Hospital beds
- Rotating beds
- Shower systems
- Adaptive seating
- Communication devices
- Home accessibility equipment
Organizations that may help (United States):
Jett Foundation Giving Fund
Little Hercules Foundation
Team Joseph
Kids Mobility Network
Walking Strong
Wheelchairs 4 Kids
Laughing at My Nightmare
Accessible Vehicles & Home Modifications
As children grow, many families begin exploring wheelchair-accessible vans, vehicle conversions, ramps, wider doorways, roll-in showers, ceiling lifts, and other home modifications.
These projects can be expensive, but many organizations provide grants or matching programs to help families bridge the gap.
Organizations that may help (United States):
Jett Foundation Accessible Vehicle Fund
Team Joseph
Walking Strong
Variety – The Children's Charity
UnitedHealthcare Children's Foundation
Travel Assistance
Travel is often part of life with Duchenne. Families may travel to specialty clinics, multidisciplinary appointments, conferences, or clinical trial sites.
Fortunately, several organizations provide assistance with transportation and lodging.
Support may include:
- Airfare
- Hotels
- Gas reimbursement
- Clinical trial travel
- Medical travel
- Conference attendance
Organizations that may help (United States):
Angel Flight
Ronald McDonald House Charities
Team Joseph
Miracle Flights
Little Hercules Foundation
First Hand Foundation
Wishes, Experiences & Creating Memories
Life with Duchenne should include more than medical appointments. Many organizations help children and families create unforgettable experiences, celebrate milestones, and enjoy opportunities that might otherwise be out of reach.
Programs may include:
- Wish experiences
- Adaptive camps
- Sporting events
- Family vacations
- Special outings
- Adventure experiences
Organizations that may help (United States):
Emergency Financial Support
Sometimes families simply need help getting through a difficult season. Unexpected medical bills, job loss, travel emergencies, and insurance denials can all create sudden stress.
Many organizations provide emergency grants designed to help families when they need it most.
Organizations that may help (United States):
United Way 211
Dial 2-1-1 or visit 211.org for local help with food, housing, utilities, and emergency needs.
Catholic Charities USA
Emergency assistance, food, housing, and financial support regardless of faith.
The Salvation Army
Emergency financial aid, utility assistance, food, and shelter support.
Local Faith-Based Organizations
Churches, synagogues, mosques, and interfaith groups often offer direct family assistance.
Jett Foundation Emergency Fund
Team Joseph
Little Hercules Foundation
Local community foundations
Medication & Medical Costs
Even with insurance or national health coverage, copays, deductibles, and out-of-pocket costs can become overwhelming. Many nonprofit organizations and pharmaceutical assistance programs provide help with medication costs, insurance appeals, and treatment access.
Your clinic's social worker or financial navigator can often help identify programs that fit your family's situation.
Don't hesitate to ask your care team or social worker about copay cards, patient assistance programs, and manufacturer support. They often know options that are not widely advertised.
Finding Local Resources
Not every program is national or international. Many communities have local charities, civic organizations, faith communities, and disability organizations that provide assistance with ramps, equipment, transportation, holiday gifts, camps, scholarships, and emergency needs.
Never hesitate to ask your care team or social worker what resources are available where you live.
You may be surprised by what's already in your own community.
Looking for more local support?
We can help you connect with vetted Duchenne organizations, local resources, and other families in your area.
Find local support
What We Wish
Someone Had Told Us
Honest advice and lessons learned from Duchenne families who've been there.
We thought asking for help meant we were failing.
It didn't.
We eventually realized that these organizations exist for one reason: because families who walked this road before us wanted to make it a little easier for the families who came after them.
Accepting help doesn't take anything away from your strength.
It gives you more energy to spend where it matters most—with your child.