Patients with Duchenne muscular dystrophy (DMD) and their caregivers now have a new tool to use to find an array of goods, programs, and services that can assist them with a variety of needs.
The resource finder is part of the Duchenne Family Assistance Program (DFAP), an effort the Little Hercules Foundation started in 2017 with Team Joseph, a nonprofit that primarily funds research to find a treatment or cure for DMD. Similarly, the nonprofit Little Hercules seeks to improve the lives of patients through advocacy, awareness, family assistance, and research funding.
Available here, the resource finder is a clearinghouse for national, state, municipal, private and public programs to help meet both daily and long-term needs. By entering an applicable zip code, patients and caregivers can find free or reduced-cost services such as medical care; legal, utility and insurance co-pay assistance; transportation; help with housing; and disability programs.
“Since launching the DFAP, we have become more aware than ever of the vast range of needs that exist in the DMD and caregiver community,” said Kelly Maynard, DFAP co-founder and Little Hercules Foundation president, in a press release. ”Our resource finder will simplify things when our DMD community members are looking for help with this devastating health condition.”
“It is our hope that those needing assistance will find this tool much easier than spending hours of precious time scouring the Internet and coming across defunct contact information, or simply not finding what they need at all,” she added.
DFAP provides resources for families seeking care options. Services include assistance with medical equipment, home and vehicle modifications, and travel funds for expert care and educational events such as conferences.
It also includes case management — working with DMD families to navigate complicated appeals processes involving public and private health insurers. Historically, the Duchenne community has had problems getting coverage for medical procedures and equipment such as scooters and shower chairs.
For more information on the resource finder, or to apply for DFAP case management assistance or waiver programs, go here. For assistance with travel to clinical appointments, home modifications, or any needs not covered by insurance, visit this site.
“Caring for a child or young adult with Duchenne can be overwhelming,” Team Joseph states on its webpage about the DFAP. “As advances in care result in an increase in the life expectancy of Duchenne patients, the long-term cost of care increases as well. Likewise, many parents must decrease work hours in order to care for their child, and those parents themselves are also aging, thus increasing the burden of care — financially, emotionally and physically.
A genetic disorder that leads to progressive determination of muscle fibers, Duchenne muscular dystrophy is the most common of the more than 30 types of muscular dystrophy. The condition mostly affects boys — about 1 in every 3,500 — although girls can also carry the mutated gene and experience some symptoms.