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What started as a team name for a walkathon in 2012, 4 Jake’s Sake has become a non-profit 501 (c)(3) charitable foundation whose main purpose is to help families living with Duchenne Muscular Dystrophy to make their homes and lives more accessible!
Accessia Health pioneered the patient assistance model for people living with chronic medical conditions. We provide financial assistance to pay for prescriptions, medical treatments and expenses, travel and insurance premiums. Our program services include healthcare education, specialized legal services, and case management. We’re leveraging our three decades of our entrepreneurial spirit to expand patient assistance support to serve today’s healthcare consumers.
"Our mission is to educate and empower the Hispanic community on rare diseases, help with resources, awareness, advocacy, and education, specializing in Duchenne muscular dystrophy. All of our resources are in Spanish."
"Para Educar y empoderar a la comunidad hispana sobre enfermedades raras, ayudar con recursos, concientización, defensa y educación, especializándose en distrofia muscular de Duchenne."
Year-round fun-filled adventures that allow children with life-threatening conditions to feel like "A Kid Again." A Kid Again works to create a communal and interactive environment. Our program establishes ongoing, nurturing experiences that complement but do not overtake their day-to-day living.
Adaptive climbing opportunities in IL, NY and MA
Independent charitable patient assistance foundation that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their co-payments, coinsurance, deductibles, and other health-related expenses.
Mission: To bring HOPE to those impacted by Duchenne Muscular Dystrophy
Austin's Hope funds DMD research and strives to enhance the quality of life for those impacted by Duchenne. This organization was founded by a family who has a child, Austin, living with Duchenne. Their faith is their "foundation" as they strive to "move mountains" in their fight against DMD. Their "fun, freedom and functionality dollars" allow families to make requests for things that help improve quality of life such as electric trikes, gaming systems, wheelchair ramps, mobility scooters, stair lifts and unique experiences.
Mission: We bring lifesaving treatment to kids living with Duchenne Muscular Dystrophy and over 8,000 rare diseases so that one day, charities like ours will no longer be needed. But as long as rare diseases exist, our mission is to make the world a better place for those who live with them. Today.
On a mission to extinguish Duchenne Muscular Dystrophy while also helping families who have children diagnosed with life-threatening illnesses live life... one BEST DAY EVER at a time! Home base is Indianapolis, IN. Best Day Ever Foundation hosts monthly meetings, "Living our BEST Lives with Duchenne" for Indiana families who have a loved one living life with Duchenne. These meetings include educational presentations as well as opportunities for families to connect and learn from each other. We also help Indiana families navigate two Indiana Medicaid waivers and help them learn about options to become paid caregivers for their loved ones living with Duchenne. We know parents learn so much from each other and we work to empower parents to share everything they have learned with each other!
Founded by Braedan's parents, Scott and Tammy Henegar, Braedan's Bridge was created to help raise funding and awareness for Duchenne Muscular Dystrophy. Registered 501(c)(3).
Center for Parent Information & Resources
Mission: Inform and train parents of children with disabilities to be effective advocates for their children.
Mission: To accelerate the development of life-saving treatments for Duchenne Muscular Dystrophy. We support the most compelling medical research and drive new solutions to translate promise into results. Founded by a Duchenne mom.
Chive Charities is a 501(c)3 organization dedicated to supporting underserved veterans, military families, first responders, and rare medical diagnosees with life-changing grants. Each week, we provide critical grants for individuals with life-altering or life-threatening needs. From therapy equipment like adaptive tricycles and robotic walkers to service dogs, wheelchair-accessible vans, and a wide range of mobility items, Chive Charities fills the gaps where insurance and other resources cannot.
Coalition Duchenne is a non-profit organization that raises global awareness and funding for Duchenne muscular dystrophy through donations and various annual fundraising events. One of our key awareness initiatives is our award-winning documentary Dusty’s Trail: Summit of Borneo (www.dustystrail.com). Our commitment is that one hundred percent of all money raised directly funds Duchenne research. Our vision is to change the outcome for boys and men with Duchenne, to rapidly move forward to a new reality of longer, fulfilled lives by funding the best opportunities for research, and creating awareness.
Non-Profit - "We advocate, create community, and partner with others to advance support for stem cell therapy for Duchenne muscular dystrophy and other rare diseases."
Dedicated to finding and funding a cure for Duchenne muscular dystrophy, CureDuchenne is recognized as a global leader in research, care, and innovation for improving and extending the lives of those living with Duchenne. Balancing business acumen with compassion, CureDuchenne breaks the traditional charitable mold using an innovative venture philanthropy model to fund research and fuel hope for families through pioneering education and support programs.
Cure Rare Disease™ is developing custom therapeutics that are as unique to the individuals they are meant to treat. Our mission is to offer effective, life-saving treatments developed through collaborations with world-renowned researchers and clinicians, and in partnership with our generous donors. Our customized therapeutics are designed specifically for the men and women who continue to fight for their right to live long, full, healthy lives despite having been diagnosed with a rare genetic disorder for which they’ve been told there is no treatment or cure.
DMD Pathfinders (UK)
DMD Pathfinders was co-founded in 2014 by Mark Chapman (now Chair) and Jon Hastie (now CEO) after working together for several years on a transition program for young people with Duchenne, run by Action Duchenne. Through this project, a need was identified for an independent organization to act as the voice of adults, sharing information and campaigning for better support and services. Located in the UK.
Duchenne Family Assistance Program
"Every child and young adult battling Duchenne deserves the resources, the equipment, access to approved treatments, and the best care that they need. Every family deserves support and partnership so they don’t have to navigate a complex medical system alone. Duchenne muscular dystrophy is progressive and aggressive. It’s a tough, emotional journey and it shouldn’t be made worse because you’re fighting insurance battles or going without important medical services and equipment when they’re not covered by insurance. Whether you need direct financial assistance for travel to clinic appointments, equipment or modifications, or you need help with insurance claims and denials, coverage for approved treatments, or guidance and mentoring, we're here for you.
We’re stronger together. We’re here to help. You are not in this alone."
In collaboration with patient groups and other key stakeholders, EspeRare uncovers the potential of existing therapies to address severe unmet therapeutic needs in rare diseases. They strive to apply their patient-centric model and pharma R&D expertise to advance the discovery of new treatments for underserved patients.
EveryLife Foundation for Rare Diseases
We are dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. We do not speak for patients. We provide the training, education, resources and opportunities to make their voices heard. By activating the patient advocate, we can change public policy and save lives.
Families Network on Disabilities
Complete integration and equality of persons with disabilities in a society without barriers and to serve families of children with disabilities, ages birth through 26.
Foundation to Eradicate Duchenne
Foundation to Eradicate Duchenne, is a 501c(3) organization established in 2002 with the goal of finding treatments and an ultimate cure for Duchenne Muscular Dystrophy, the world’s leading lethal childhood genetic disease.
Good Days is a national non-profit charitable organization that lifts the burdens of chronic illness through assistance, advocacy, and awareness.
The HealthWell Foundation is a leading independent non-profit dedicated to improving access to health care for America’s underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses. In 2022, we awarded more than $896 million in grants through our Disease Funds, and since 2004 we have helped more than 822,000 patients afford essential treatments and medications. HealthWell is recognized as one of America’s most efficient charities — 100 percent of every dollar donated goes directly to patient grants and services.
We provide financial assistance to help with:
Our mission is to raise research dollars and awareness of Duchenne Muscular Dystrophy. We are committed to funding research that will result in effective treatments in the near-term. Our specific focus is on treatments that will preserve muscles in DMD boys while researchers continue to search for the cure to DMD. Hope for Gus is also committed to helping those with Duchenne and their families improve their quality of life. We will work to build collaboration within the DMD community because we KNOW that we are stronger TOGETHER. Additionally, we hope to raise public awareness through fund-raisers, family events and corporate sponsorship.
Hunter's Heart Foundation is a non-profit organization dedicated to enriching the lives of children battling Duchenne Muscular Dystrophy (DMD). We achieve this mission by providing comprehensive support and resources, championing research and treatment advancements, and raising public awareness about DMD.
17434 Bellflower Blvd. Suite 121.
Bellflower, CA 90706
(323) 826-4437
We help Indiana children diagnosed with life-threatening illnesses create a lifetime of memories when that lifetime is uncertain. For nearly four decades, Indiana Wish has supported the dreams of Hoosier children—blanketing the entire state of Indiana with hope.
Dedicated to increasing awareness of Duchenne Muscular Dystrophy (DMD) while appropriating funds for quality of life, care, and research; ensuring affected children will have better opportunities during their lifetime.
Jesse's Journey (CANADA)
Research is at the core of what we do and finding a treatment and cure for Duchenne muscular dystrophy is our only objective. In fact, Jesse’s Journey is the only Canadian charity solely focused on funding the most promising research to defeat Duchenne. That is why we continue to expand our research portfolio and encourage and invite researchers, clinicians and scientists to explore our grant program and why we seek input from parents and children affected by Duchenne.
Our mission is to extend and enrich the lives of individuals affected by Duchenne Muscular Dystrophy and other neuromuscular disorders. We fulfill this mission by partnering with individuals and families through empowering educational programming, transformational direct service experiences, and by accelerating development of life-changing treatments.
Joaquin's Warriors is a foundation aimed at raising money for continued research into finding a cure for Duchenne Muscular Dystrophy. Additionally, our goal is to support Joaquin and other young boys like them in their fight against this disease. We want to make an impact in all aspects of their lives from the various types of assistive medical devices needed to home/car modifications and medical bills.
Kindness Over Muscular Dystrophy (KOMD)
Kindness Over Muscular Dystrophy, Inc. is a 501 (c)(3) organization with a mission to provide charitable giving to support Muscular Dystrophy research as well as benevolent assistance and advocacy to those in need. We started our journey as parents with family and friends, raising funds for Parent Project Muscular Dystrophy, a 501(c)(3) organization to donate towards research. We raised over $800,000.00 for PPMD in five years through various events we hosted throughout the years. However, recently, we felt compelled to expand our mission to include assisting those Duchenne patients in desperate need.
Founded by Duchenne mom, Kelly Maynard, Little Hercules Foundation works to improve the lives of those diagnosed with – and families facing – Duchenne Muscular Dystrophy through Advocacy, Awareness, Family Assistance and Funding Research.
Lori’s Voice is a non-profit organization which was founded and established to help young people with disabilities. This organization evolved from Lori Hastings great love for children and the realization of so many challenges young people face when living with a disability. Mission statement: Providing financial assistance to support and enrich the lives of children with neuromuscular and degenerative diseases. Our mission is to provide financial assistance for families who are unable to afford adaptive equipment, travel, therapy and other items that are not [fully] covered by insurance or other organizations.
Qualifications requirements:
We expect families to actively fundraise for the majority of the costs and seek assistance from other charities and governmental agencies. Vehicle assistance is limited to Michigan residents.
We create life-changing wishes for children with critical illnesses.
The Marty Lyons Foundation was established in 1982 to fulfill the special wishes of children (ages 3 - 17) who have been diagnosed as having a terminal or life-threatening illness by providing and arranging special wish requests. Marty Lyons was a professional football player in the National Football League, where he served for twelve years as a premiere defensive lineman for the New York Jets. The Marty Lyons Foundation has kept hope alive in the hearts of children with a terminal or life-threatening illness by making their special wish come true! A fulfilled special wish has the ability to sweep the children and their family away from the daily heartache of illness. It is a joyous time that creates a wonderful memory and a better quality of life. Every child has a dream, and although we can’t promise a lifetime of happiness to these seriously ill children, we can make one dream a reality!
Sometimes, a device is all that stands in the way of an individual with a disability achieving independence or pursuing their passion. When that device is not available in the marketplace, that’s when May We Help’s volunteers step in. They are a team of engineers, industrial designers, inventors, welders, woodworkers, seamstresses, doctors, occupational and physical therapists whose skill sets come together to design, build and deliver custom devices at no cost to hundreds of recipients every year. (513) 834-6443
Michael’s Cause contributes 100% of proceeds for programs, grants, and projects that support its mission to provide and appropriate funds that benefit the community for which it serves. Funds are not to be used for institutional, administrative, overhead, or indirect costs, only direct patient care or research.
At A Mother's Rest, we believe that frequent, affordable respite is a key factor in keeping special needs parents and caregivers healthy. Ensuring the best care for disabled children and adults means ensuring the best care for their parents. The need is SO great across the nation for *affordable* respite, fellowship, and community living options among special needs families.
A Mother's Rest began with the idea for just one small respite inn located in rural central Virginia. Our vision has grown from that one small respite inn to one that includes local and national partners and communities.
The goals of A Mother’s Rest are to:
Muscular Dystrophy Association (MDA)
Since 1950, MDA has spearheaded efforts to transform the lives of people with muscular dystrophy, ALS, and related neuromuscular diseases. They fund groundbreaking research for promising treatments and provide families with the highest quality care from the best doctors in the country.
Muscular Dystrophy Family Foundation (MDFF)
Since 1958, the Muscular Dystrophy Family Foundation (MDFF) has provided financial assistance, quality programs and services for the Muscular Dystrophy community in Indiana. We focus on providing adaptive equipment and direct support services to individuals and family members affected by a neuromuscular disease. Direct support services include annual social events and other equipment and services that enable those with Muscular Dystrophy to enjoy greater mobility and independence. MDFF is a qualified 501(c)(3) nonprofit tax-exempt charity organization under federal tax guidelines.
Founded by the Andrews family in Ohio, this 501(c)(3) nonprofit organization helps families obtain the life-changing equipment they need to help them live life to the fullest.
Noah’s Feat is named for Karen Stahler's grandson, Noah McRitchie, who has Duchenne Muscular Dystrophy.
A note from Karen: We are a small 501c3 charity that has made donations to larger charities committed to research such as Parent Project Muscular Dystrophy, Team Joseph, the MDA, and the Jett Foundation to name a few through Wheelchair Basketball games, fishing tournaments, t-shirt sales, and other activities. We were focused on research, but have since moved the emphasis to spreading awareness by swimming a mile of #hopestrokes for different Duchenne heroes three times a week and posting on Facebook. Over 700 miles have been done in the hope of spreading the word to defeat Duchenne.
For more information, e-mail Karen at kcstahler@gmail.com.
Since 1983, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported and connected. We’re a full-service, mission-driven nonprofit reimagining a future where every person with a rare disease, and their families live their best lives.
Founded in 2005, the NESHL is the first-ever organized, multi-state, adult sled hockey league in the United States. We are a 501(c)(3) nonprofit organization. Our athletes range from Maine to Maryland and to Ohio! We play games in many states from September to March each year. Year-round, we work to promote awareness of Sled Hockey and support people with disabilities. Playing on a NESHL team is life-changing—our athletes gain independence, confidence, and a positive attitude.
With innovation and better care, those with rare diseases are living longer, and healthier lives than ever before. While there are many supportive programs and camps intended for children and their families, it is often those teens and young adults aging out of the programs who need them the most. One Rare was founded by a mother of two young adults with Duchenne Muscular Dystrophy after significant frustration with the lack of recreational, social and educational activities available to foster independence in her sons and others like them. The goal of One Rare will be an organization staffed by young adults with a rare disease and their supporters, serving young adults with rare diseases. This provides the dual benefit of providing employment experience and opportunities to a population that is often overlooked, and support to the same community.
The PAN Foundation is an independent, national 501 (c)(3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic and rare diseases with the out-of-pocket costs for their prescribed medications.
Parent Project Muscular Dystrophy (PPMD)
Parent Project Muscular Dystrophy was founded in 1994 by president and CEO Pat Furlong and a group of parents and grandparents who were frustrated by the lack of investment in Duchenne research. The name of the organization reflects our grassroots origins, parent-led focus, and passion, and is recognized around the world as the leader in the Duchenne community. Because of our efforts, families affected by Duchenne have better access to state-of-the-art care information, research is moving forward at an accelerated pace, legislation now exists to fund Duchenne research and outreach programs, and there are two approved therapies. Today, our passion continues to drive the organization to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne.
Patient Advocate Foundation Co-Pay Relief
Patient Advocate Foundation's Co-Pay Relief program exists to help reduce the financial distress patients, and their families face when paying for treatment. We believe that no patient should go without life changing medications because they cannot afford them. We are here to help.
The mission and vision of Pietro’s Fight is to increase worldwide awareness of Duchenne Muscular Dystrophy, with the purpose of raising and appropriating funds for research that will realize a cure for this fatal disease and ensure that children like Pietro have the opportunity to enjoy a full life. Our vision is to raise awareness, extend and improve the lives of those afflicted with Duchenne.
SAWs is a non-profit organization dedicated to building ramps and providing freedom to low-income/disabled individuals. SAWs was founded in 2003, and last year built their 3,000th ramp. They build ramps throughout all of Indiana. If you need a ramp or know someone who needs a ramp and would like to apply for or recommend someone, visit SAWs or contact them at info@sawsramps.org
Jordan McLinn and his support team are on a mission to extinguish Duchenne! Founded by his mom, Laura McLinn, Team Jordan's home base is Indianapolis, IN.
Founded by Duchenne mom, Marissa Penrod, 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 their goal that when a parent hears a diagnosis of Duchenne, it is simply a manageable condition and no longer terrifying news. Their focus is on rapidly moving basic research into applications that can make a difference for the current generation of boys afflicted with this devastating disease as well as for generations that aren’t even born yet. This is a caring community of motivated people joined together in efforts to give young boys affected by Duchenne muscular dystrophy, not only a chance at a better life, but simply a chance at a life.
Variety - The Children's Charity
Serves children who are less fortunate- children who live and grow up with a serious illness, disability or disadvantage.
Founded by DMD parents, Valerie and Jorge Llauro, their mission is to build a supportive community to help us end Duchenne Muscular Dystrophy by raising money for ground-breaking research, spreading awareness, and providing aid to children and families with Duchenne. Walking Strong is recognized as a public charity under Internal Revenue Code section 509(a) and has 501(c)(3) status.
Our amazing team of family and friends are doing all they can to help us raise the necessary funds to provide Drew with the best possible medical care and to fight this disease! We received our 501(c)(3) Non-Profit approval in May of 2020 and prior to that we were a registered charitable organization since May of 2019. New, but dedicated to eradicating this disease! Our mission is twofold: 1. To provide Drew with the best traditional and non-traditional treatments and therapies which are available; 2. To find a cure to this disease through raising funds and awareness and joining with strategic partners conducting trials and research!
The World Duchenne Organization is a worldwide organization dedicated to finding a cure and viable treatments for DMD, to promoting good standards of care, and to inform parents around the globe.
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