our projects
Brighter Days
Community Support Fund
​Our grant program provides financial aid to qualified families and individuals residing in Upstate New York. 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.
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For more information and to apply for a grant,
visit the Jett Foundation's website.
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research
We prioritize funding for innovative research projects that advance the understanding of DMD. We intend to accelerate the development of effective therapies, and ultimately find a cure for this disease. Examples include:
Akashi Therapeutics: Suneel’s Light provided research funding to Akashi Therapeutics for the development of a drug that would alleviate the effects of the muscle damage in DMD. HT-100 (delayed-release halofuginone) is an orally available, small molecule developed to reduce fibrosis and inflammation and promote healthy muscle fiber regeneration in boys with DMD.
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Sarepta Therapeutics: Suneel's Light provided research funding to Serepta Therapeutics. In September 2016, the FDA granted accelerated approval to eteplirsen (brand name Exondys 51) as the first disease-modifying drug for DMD.
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PATIENT support
We offer programs tailored to the unique needs of DMD patients and their families. From providing access to medical resources and assistance with daily challenges to offering emotional support and community connections, our programs are designed to improve their quality of life. Examples include:
Financial Assistance Program: Duchenne Muscular Dystrophy patients incur extraordinary expenses related to the disease, oftentimes not covered by insurance. Suneel’s Light is proud to offer its Brighter Days Community Support Fund, administered by the Jett Foundation to help qualified families. Visit the Jett Foundation for more information and application details.
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Robotic Exoskeleton Arms: Suneel's Light provided funding for twelve local boys to receive Wilmington Robotic Exoskeleton arms (WREX). The light weight exoskeleton device helps the person imitate normal human movements and improves their independence.
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advocacy AND AWARENESS
We believe in the power of education and advocacy to drive positive change. We increase public understanding of DMD, dispel myths, and promote early detection and intervention. Examples include:
National Testimony: Our board members have 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 DMD, and making them available and affordable for patients.
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Insurance Companies: Although drugs are approved for DMD patients, some are still denied coverage by their insurance companies. Suneel's Light provides advice and resources for families, helping to guide them through the appeals process.
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Education: Suneel's Light provided financial support for the publication of Soaring, A Story of Courage. We also made copies available to teachers and students at more than 200 schools in Western New York to help raise awareness of DMD, build compassion, and increase support for those living with the disease. Read more about it below.
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.
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Soaring is part of a powerful graphic novel series designed "to spotlight young writers with heartfelt stories that enlighten and inspire." 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.
About Zuiker Press
Zuiker Press is an issue-based publishing company that champions the voice of young authors.
Anthony E. Zuiker is the creator and Executive Producer of the hit CSI television franchise. He is also credited with pioneering the “Digi-novel” genre and is the author of the bestselling series, Level 26.
Michelle Zuiker, born in Buffalo, is a retired educator who taught second through fourth grade for seventeen years. She incorporates her extensive experience working with children to create nonfiction graphic novels by young storytellers and provide a safe harbor for kids in need of true stories about tough subjects with which they identify.
Where to buy a copy
Soaring is available on online and at local book sellers:
Amazon | Barnes & Noble
Books-A-Million | Bookshop | IndieBound | Indigo
Artwork by Fantoons Animation Studio, used with permission by Zuiker Press