a beacon of hope
Funding research to develop treatments and a cure for
Duchenne Muscular Dystrophy,
and improving the lives of those affected by the disease.
DUCHENNE MUSCULAR DYSTROPHY
Duchenne Muscular Dystrophy (DMD) is a rare genetic disorder characterized by progressive muscle degeneration and weakness resulting from mutations in the dystrophin protein. While the absence of dystrophin leads to muscle damage and weakness, advances in research provide hope for effective treatments.
Though predominantly affecting boys, girls can also be carriers of the gene. Despite its rarity, with an estimated occurrence of 1 in 3,200 male births, it profoundly impacts families in our community, with approximately 15 children in Western New York currently facing this challenge.
Amidst the difficulties, there is an abundance of hope. Research breakthroughs and innovative therapies offer promising avenues for treatment and management.
Over the past two decades, Suneel’s Light Foundation has raised more than $1.5 million to advance our mission and make an impact in the lives of those affected by DMD.
Your generous donations support:
Through sponsored research and clinical trials, there are now several FDA-approved drugs for those with DMD and numerous drugs in the research pipeline.
While there is still no cure for this devastating disease, the life expectancy of those afflicted has increased by 10 years and there are treatments that help improve quality of life.
Suneel's Light sponsored research that led to one of the first FDA-approved drugs for DMD, and we continue to support ground-breaking research.
Living with DMD can impact families financially and emotionally. We support local WNY families by providing resources, access to research and treatments, and advocacy on their behalf.
For example, the Brighter Days Community Support Fund provides financial aid for families grappling with Duchenne Muscular Dystrophy. See below for details.
We've also provided financial support for assistive devices like Wilmington Robotic Exoskeleton arms (WREX), which helps the person imitate normal human movements and improves their independence.
While there are now treatment options for some DMD patients, access to them may be limited by government restrictions or insurance companies. Advocacy has become an increasingly important aspect of our work.
Our board member and founder, Neera Gulati, MD, testified at FDA advisory-panel meetings and other government agencies, educating and urging them to grant "fast-track status" to drugs that show promise in treating Duchenne, and making them available and affordable for patients.
Brighter Days Community Support Fund
Our grant program provides financial aid to qualified families and individuals residing in Upstate New York affected by DMD. The program is designed to help alleviate stress and allow families to focus on their loved one's health and well-being during what can be very challenging and expensive times.
Eligible expenses include rent/mortgage assistance, utilities, transportation, food, quality of life support, adaptive devices, medical care and more. Detailed information can be found in our press release (pdf).
The program is administered by the Jett Foundation, which works to empower people and families impacted by Duchenne Muscular Dystrophy.
For more information and to apply for a grant,
visit the Jett Foundation's website.
Soaring: A Story of Courage
by Suneel Ram
Graphic novels are especially appealing to children and teens, challenging readers with a combination of illustrations and words to tell compelling stories. In this book (Zuiker Press, 2023), Suneel Ram expresses the loneliness and frustration of living with Duchenne Muscular Dystrophy, and how an American bald eagle helped him to rise above his affliction and find his voice.
Soaring is part of a powerful graphic novel series designed "to spotlight young writers with heartfelt stories that enlighten and inspire." In these graphic novels, young people share their personal experiences with bullying, racism, divorce, autism, school shootings, suicide and much more, providing the basis for meaningful discussion and education around these topics.
Suneel's Light provided financial support for the project, helping to publish and make copies of the book available to teachers and students in over 200 schools in Western New York.