The diagnosis of Duchenne muscular dystrophy is difficult for families. What makes it more challenging are expenses associated with caring for an affected person. Wheelchairs, ramps, vans, and home modifications can be expensive and a burden to families.

Limits on private and government provided insurance mean much of the cost is born by families and other funding sources are limited. Nonprofit groups such as fraternal organizations, churches, and a few devoted to helping the disabled may provide help.

ABLE Accounts

  • What is the ABLE Act?
    Whiteboard video that outlines the ABLE Act
  • ABLE National Resource Center
    The ABLE National Resource Center (ANRC) is a collaborative that brings together the investment, support and resources of some of the country’s largest and most influential national disability organizations in an effort to accelerate the design and availability
  • ABLEnow
    ABLEnow savings accounts help individuals with disabilities save money to pay for qualified expenses, without being taxed on the earnings – and in most cases, without losing eligibility for certain means-tested benefit programs

Home Modifications

Medical Needs

  • The Assistance Fund
    Foundation that helps families facing high medical out-of-pocket costs by providing financial assistance for copayments, coinsurance, deductibles, and other health-related expenses
  • Aubrey Rose Foundation
    Provides financial assistance to help cover medical bills for families of children with a life-threatening medical condition
  • Duchenne Family Assistance Program
    This program is a partnership between Little Hercules Foundation and Team Joseph. Through their Duchenne Family Assistance Program, Little Hercules Foundation provides case management services to patients and caregivers who have been denied access to treatments, clinical care, equipment, and social services. Team Joseph provides financial assistance for families procuring necessary medical equipment, travel assistance for those who travel long distances for expert care or clinical trial screening/visits, and support to attend educational meetings and conferences for those wishing to better understand Duchenne, standards of care, and the therapeutic landscape.
  • Duchenne Family Assistance Program Resource Search Tool
    Search for free or reduced cost services like medical care, co-pay assistance, food, utility assistance, transportation, disability programs, and more.
  • First Hand Foundation
    First Hand Foundation is a public 501(c)(3) organization that provides funding for individual children—both domestically and globally—who need assistance with clinical necessities (such as surgery, medication and therapy), medical equipment and travel related to care.
  • Jett Giving Fund
    Jett Foundation, a 501(c)3 nonprofit, established Jett Giving Fund to assist families affected by Duchenne muscular dystrophy in purchasing unaffordable, but vital medical and accessibility equipment that is often not covered by insurance. This includes accessible vans, van conversions, stair lifts, rotating beds and more. Jett Giving Fund participants raise 50 percent of cost of the item they need, then Jett Foundation, through the support of generous corporate and individual donors, will match the remaining 50 percent and purchase the piece of equipment needed for the individual or family.
  • Kids Mobility Network
    Kids Mobility Network is a 501(c)3 non-profit organization providing children with disabilities with durable medical equipment such as wheelchairs, walkers and other medical equipment.
  • Laughing At My Nightmare
    Laughing At My Nightmare is a 501(c)3 nonprofit with a mission to spread a message of positivity while providing equipment grants to those living with muscular dystrophy.
  • The Lindsay Foundation
    The Lindsay Foundation is a 501(c)3 non-profit organization whose primary goal is to assist families with the resources necessary to provide medical treatment, therapies, and rehabilitative equipment in order to improve the quality of life for their special-needs children.
  • Miracle Flights
    Miracle Flights provides financial assistance to low-income children for commercial air travel to obtain special medical care
  • NeedyMeds
    NeedyMeds is a 501(c)(3) national non-profit information resource dedicated to helping people locate assistance programs to help them afford their medications and other healthcare costs.
  • Project Mend
    Project MEND is committed to improving the quality of life for individuals living with disability and illness through the refurbishment, reuse and distribution of medical equipment and other assistive technology.
  • The Self-Sufficiency Grant
    This grant from ModestNeeds.org seeks to offer support to individuals and families who need assistance, but don’t qualify as being “low-income” households. Their goal is to help ensure that families living just above the poverty line don’t have to spend their last dollar on necessities like adaptable home repairs.
  • United Healthcare Children’s Foundation
    The UnitedHealthcare Children’s Foundation (UHCCF) is a 501(c)(3) charitable organization that provides medical grants to help children gain access to health-related services not covered, or not fully covered, by their family’s commercial health insurance plan.
  • Variety –The Children’s Charity
    Group that offers grants for children with special needs
  • Walking Strong
    Walking Strong proudly has an assistance program that helps Duchenne families with their over-bearing medical needs that are most often not covered by insurance. To date, we have provided families with life-changing items such as: a handicap accessible van, Hoyer lifts, in-home ramps, alternative therapies, medical travel expenses and on-line training courses for older Duchenne teens to help provide them with a career.

Other Helpful Links

  • American 1 Credit Union
    Bank that has experience in financing mobility vehicles
  • Duchenne Family Assistance Program
    This program is a partnership between Little Hercules Foundation and Team Joseph. Through their Duchenne Family Assistance Program, Little Hercules Foundation provides case management services to patients and caregivers who have been denied access to treatments, clinical care, equipment, and social services. Team Joseph provides financial assistance for families procuring necessary medical equipment, travel assistance for those who travel long distances for expert care or clinical trial screening/visits, and support to attend educational meetings and conferences for those wishing to better understand Duchenne, standards of care, and the therapeutic landscape.
  • Knights of Columbus
  • Lions Club International
  • Muscular Dystrophy Family Fund
    Provides limited funding to patients affected by muscular dystrophy
  • Nord Rare Care
    The Respite Program provides ­financial assistance to enable the caregiver a break to attend a conference, event or simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $500 annually for those who qualify. Awards may be spread throughout the year or in a single use.
  • Rotary International

Tax Deductions

Looking for state-specific resources? Check out our state-specific page

What resources would you like to add or update?
Email your suggestions to resources@parentprojectmd.org!

 
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