RESOURCES

When JB was first diagnosed, his family was LOST. They scoured the web to find out anything. As time has gone on; JB, JB's Keys, and our DMD network has grown.

​Below, find the best resources we have assembled.

GENERAL DUCHENNE CARE RESOURCES

​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 and care centers, 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 guide

  • Parent Project Muscular Dystrophy Fights to end Duchenne. We accelerate research, raise our voices to impact policy, demand optimal care for every single family, and strive to ensure access to approved therapies. Information on everything related to Duchenne.

  • Muscular Dystrophy Association Dedicated to curing muscular dystrophy, ALS and related diseases. Join us today. Volunteer. Fundraise. Find Services. Types: Amyotrophic Lateral Sclerosis (ALS), Charcot-Marie-Tooth Disease (CMT), Congenital Muscular Dystrophy (CMD), Duchenne Muscular Dystrophy (DMD).

  • Duchenne.com A source of knowledge, hope, and sharing created for the Duchenne community.

  • Duchenne Exchange Supportive peers, hand-picked educational resources, clinical trial information.​​

  • Trial Bulletin Search for Clinical Trials for Duchenne. 

  • Clinicaltrials.gov Search for Clinical Trials for Duchenne. ​

  • The Duchenne Program at UMass Medical School A program that JB's Keys to DMD is proud to support, this program is a clinical and research site devoted exclusively to extending and enhancing the lives of people with Duchenne Muscular Dystrophy. Their mission is to deliver the best care possible to the Duchenne community while urgently advancing research for improved outcomes and therapies.

EQUIPMENT & SERVICES 

​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.

  • JB's Keys to DMD & REQ Loan Program Loaning equipment on short or long term for travel or home at no cost to the individual. 

  • 4 Jakes Sake Providing equipment to make homes more accessible for children with Duchenne Muscular Dystrophy.

  • Jett Giving Fund Offering families financial assistance through three branches of support: the Accessible Vehicle Fund, the Emergency Fund, and the Equipment Assistance Fund.

  • MassMatch/reQuipment  Durable medical equipment (DME) re-use program offering free refurbished wheelchairs, scooters, shower chairs and more to adults, children and elders living in Massachusetts.

  • McLindon Family Foundation Providing special needs children with adaptive bikes.

  • Nonprofit Funding for HC Accessible Vehicle Grants (by State) Look for accessible vehicle grants by state.

  • NOVA (The National Organization for Vehicle Accessibility) Assisting those with mobility needs through education, information and product acquisition.

  • Smile Mass SMILE Mass has several pieces of equipment for families to borrow and take anywhere with them, FREE OF CHARGE.

  • Special Kids Fund Wheelchair van assistance program.

  • The Mobility Resource A network of mobility dealers specializing in new and used wheelchair vans who make traveling easier for you and your loved ones. Our customized solutions are available to those with a wide range of evolving mobility needs.

  • Wheelchairs 4 Kids ​Offering wheelchairs and other mobility devices and equipment for America’s disabled children.​

GRANTS & FINANCIAL ASSISTANCE

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.

  • ​​JB's Keys to DMD & Team Joseph Family Assistance Providing support related to the care of a child with Duchenne in order to ensure the best care and to ease the strain on families.​

  • Catastrophic Illness in Children Relief Fund (CICRF) - Massachusetts and New Jersey - helps families bear the excessive financial burdens associated with the care of children with special health care needs and disabilities.​

  • Giving Angels Foundation  Awards grants to lower income families with child(ren) with disabilities.

  • Ray Tye Medical Foundation Dedicated to funding in-hospital life saving medical treatment and surgeries for those who have no or inadequate medical insurance, and for which no other financial resources are available.

  • Patient Airlift Services (PALS) Arranges free air transportation for individuals requiring medical diagnosis, treatment or follow-up, for compassionate assistance.​

  • The Assistance Fund Copays shouldn't interfere with your life. That's why we work everyday to give you access to the medications you need.

  • UnitedHealthcare Children's Foundation Improving children’s lives and help families gain access to the care they need through medical grants.  

TRAVEL & ACTIVITIES

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.

  • US Volt Hockey Association- Promoting the growth and coordinate the activities of volt hockey in the United States

  • Access Recreation Boston A great resource in the Boston and surrounding areas for adaptive recreational activities.

  • Camp Promise A barrier-free, weeklong overnight camp for kids, teens, and adults with muscular dystrophy or select neuromuscular diseases—regardless of age, capability, or ability to pay.

  • Camp Sunshine A retreat for children with life-threatening illnesses and their families.

  • David's Refuge A place of respite free of charge for parents and guardians who care for children with special needs or life threatening medical conditions, allowing them the much needed time to rest, reflect and recharge from the stress of full-time caregiving.

  • Double H Ranch Children dealing with critical or life-threatening illnesses the chance to experience the magic of the Adirondacks.

  • Dream Day Cape Cod Week long FAMILY camp on Cape Cod offered to at no charge to families with children with life-threatening conditions.

  • Easterseals Day and residential camps serving children, adults and families of all abilities.

  • MDA Camp Free residential camps for children with neuro-muscular disabilities.

  • Ride A Wave Giving children with special needs the chance to feel the thrill of riding a wave and experience a safe, fun-filled day at the beach.

  • Team Impact Connects children facing serious and chronic illnesses with local college athletic teams, forming life-long bonds and being a solid member of the team.

GOVERNMENT/MEDICAID RESOURCES

Navigating the various government and social programs that provide help to Duchenne patients can be overwhelming. Here, we include links to various government programs.

WISH FOUNDATIONS

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.

  • A Special Wish Granting the wishes of children under the age of 21 who have been diagnosed with a life-threatening disorder.

  • Catch-A-Dream Granting outdoor adventures to children from across the United States.

  • Cherished Creations Enriches and empowers the lives of seriously-ill children and the underprivileged, giving them hope for a brighter tomorrow.

  • Do It For The Love Making live concerts, by any artist, available to those who need the healing power of music the most. To date, we have made over 1000 musical wishes come true thanks to the love and support of our incredible community. 

  • Hunt of a Lifetime Grants hunting & fishing dreams for children age 21 and under, who have been diagnosed with life threatening illnesses or life threatening disabilities.

  • Kids Wish Network Dedicated to infusing hope, creating happy memories, and improving the quality of life for children with life-threatening conditions and those struggling with life-altering situations.

  • Make-A-Wish Granting the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy. 

  • Special Spectators Creating VIP, all-access Game Day experiences for seriously ill children and their families at sporting events across the country.

  • Sunshine Foundation Answers the dreams of chronically ill, seriously ill, physically challenged and abused children ages three to eighteen, whose families cannot fulfill their requests due to financial strain that the child’s illness may cause.

  • The Marty Lyons Foundation Fulfills the special wishes of children who have been diagnosed as having a terminal or life-threatening illness by providing and arranging special wish requests. We are unique in that we will grant a second wish to a deserving child.