Duchenne can be a long and complex journey. Caregivers find themselves wearing multiple hats – parent, advocate, educator, scientist, fundraiser, and therapist - just to name a few. We try and take some of the time and guesswork out of internet searching. We work to identify meaningful, outside resources across the United States that can provide a life-line for some key needs one may face when living with Duchenne. No one should have to walk this path alone.
Newly diagnosed Duchenne families often have many questions and need a place to turn to for answers as they begin to process information in their own way and at their own pace. Even patients and caregivers already on their journey with Duchenne sometimes find themselves facing new hurdles, raising the need for information. Nationally recognized organizations, such as those listed here, can serve as a valuable resource for physical, emotional and family-centered support. They provide information that you can tailor to your interests and situation by way of online guides, conferences, webinars, and regional meetings.
Caring for someone with Duchenne can be financially burdensome. Several foundations and organizations are focused on providing grants or monetary assistance for children and families facing a rare diagnosis. Whether you need help with insurance coverage, medical care, medical equipment, vehicle modification, or raising funds to support your family, these organizations are here to lend a financial hand.
It is hard to imagine what needs one may have along the journey, but it feels good to know that you have someone there when you need it. Hundreds of organizations focus their efforts on assisting families of critically ill children. We tried to select a few organizations whose services relate to Duchenne. Whether you need help with an IEP at school, finding medical housing during hospitalization, planning for home modifications, or simply ensuring your child has an amazing birthday cake each year... these organizations have you covered.
Duchenne patients typically lose the ability to walk between the ages of 8-12. Medical equipment and assistance with adaptive living is an early and common need of Duchenne families we hear from. Several non-profit organizations are dedicated to improving the lives of children with physical disabilities. Custom wheelchairs, widened doors, ramps, stairlifts and wheelchair vans are just some of the things these organizations assist in providing.
Families thrust into a life of Duchenne are unprepared and often unequipped to deal with the journey ahead. It might even feel like they have lost a grip on their lives and the situation overall. Various organizations focus on enabling “normal” activities for those with life-threatening illnesses. Positive, family experiences already adapted to special needs mean you don't have to worry about anything but having fun and creating memories.
Children facing a life-threatening medical condition deserve to have amazing experiences. Wish foundations exist to help grant them just that. Requesting a wish for someone with Duchenne could have the power to strengthen their mind and also let them be a kid again, even if for a dream-like moment in time. Be sure to read through each foundation’s criteria and area of expertise to help find the perfect match.
Navigating the various government and social programs that provide help to Duchenne patients can be overwhelming. Here, we include links to various government programs.
Check out these links to locate clinical trials for Duchenne:
Little Hercules Foundation relies on the generosity of individuals around the world, like you, who believe in our mission and in the power to make a difference in the lives of those diagnosed with — and families fighting against — Duchenne muscular dystrophy.