Little Hercules Foundation and Team Joseph Join Together to
Launch National Duchenne Family Assistance Program
First-of-Its-Kind Initiative Will Provide Support to
Families Who Are Seeking Care Options
Columbus and Detroit (October 18, 2017) – Little Hercules Foundation and Team Joseph, two nationally-recognized patient advocacy leaders in the field of Duchenne muscular dystrophy (DMD), today announced the formation of the Duchenne Family Assistance Program, a first-of-its-kind initiative that will provide expanded resources for families seeking care options. This includes working with DMD families to navigate complex appeals processes involving both public and private health insurers.
“Historically, our focus has been funding research that leads to treatments for DMD. We’re finally seeing progress in the form of new treatments, but patients are having trouble accessing them,” said Kelly Maynard, president of Little Hercules Foundation. “On top of living with a nightmare disease like DMD, our families are having to navigate a complex payer system often to get denied access to care. Our children don’t have time for that, and our families deserve better.”
More than 15,000 individuals in the United States have DMD, with one in 5,000 male births affected by the disease; girls can be affected also but it’s very rare. The average lifespan of a person with Duchenne is in the mid-20’s.
This new partnership will also expand services to include assistance in accessing equipment, travel and education.
“While we remain committed to funding promising research and we believe in the real potential for future treatments, we know that there is a great need to help families right now, today,” said Marissa Penrod, founder of Team Joseph. “The burden of caring for a child or young adult with Duchenne can be staggering. Through the program, we will ease this burden on families, helping them to provide the best quality of life for their child. We are thrilled to assist with medical equipment, travel to care centers, and home and vehicle modifications, and we look forward to helping as many families as possible.”
Penrod founded her non-profit organization in 2009 after her son, Joseph, was diagnosed with DMD.
In order to work most effectively, Little Hercules Foundation will provide case management services to patients and caregivers who have been denied access to care for Duchenne. Team Joseph will take the lead on providing assistance that includes, but is not limited to, equipment (scooters, manual wheelchairs, shower chairs, etc.), accessible ramps, transportation to clinic visits, vehicle and home modifications. Assistance is also available for educational opportunities, such as conferences, so families can educate themselves about the therapeutic landscape and improved standards of care.
“As my son started to experience more and more difficulty walking, we desperately needed a power wheelchair,” says Jennifer Shumsky, whose 15-year-old son, Xavier, has Duchenne muscular dystrophy. “Team Joseph and Little Hercules Foundation assisted us in obtaining one, and because of that he has maintained his independence and his ability to get around school safely. We are thrilled to know that other families will benefit from these two organizations’ commitment to serving our community.”
To learn more about the Duchenne Family Assistance Program, visit Little Hercules Foundation at http://littleherculesfoundation.org/resources/family-assistance-program/ and Team Joseph at http://www.teamjoseph.org/1842/team-joseph-family-assistance-program.
About Little Hercules Foundation
Little Hercules Foundation is a registered, non-profit 501(c)(3) organization based in Dublin, Ohio. Little Hercules Foundation got its start in January 2013 when three moms, two of whom had sons diagnosed with Duchenne Muscular Dystrophy, decided to host events to help fund research. Since then, Little Hercules Foundation has grown into much more. We focus on improving the lives of those diagnosed with Duchenne Muscular Dystrophy through four main pillars: Advocacy, Awareness, Family Assistance and Funding Research.
About Team Joseph
Team Joseph is a non-profit organization whose mission is to aggressively fund cutting edge research to find a treatment or cure for Duchenne muscular dystrophy. It is our goal that when a parent hears a diagnosis of Duchenne, it is simply a manageable condition and no longer terrifying news. Our focus is on rapidly moving basic research into applications that can make a difference for current and future generations of boys afflicted with this devastating disease, as well as providing support to Duchenne families.