Duchenne Family Assistance Program Expands to Include Resource-Finder Tool

Duchenne Family Assistance Program Expands to Include Resource-Finder Tool

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.”

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“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.

Mary Chapman Editor
Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Mary Chapman Editor
Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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