news & Events
PRESS RELEASE: Brighter Days
Community Support Fund
For Immediate Release
July 22, 2024
Hope Shines Brighter: Suneel's Light Foundation Partners with Jett Foundation to Support Upstate New York Families Caring for Loved Ones with Duchenne Muscular Dystrophy
The newly launched Brighter Days Community Support Fund will provide a vital safety-net for Duchenne’s families across the 30 counties of Upstate New York
Buffalo, New York – To provide a beacon of hope for families grappling with Duchenne muscular dystrophy (DMD) across Upstate New York, Suneel's Light Foundation has launched a new critical community grant program, Brighter Days Community Support Fund. The annual program starting August 1st, 2024, is a dedicated emergency assistance for families across the 30 counties that make up Western New York, the Finger Lake region, and Central New York, providing vital financial support to families facing unforeseen circumstances derived from caring for a loved one suffering from Duchenne’s. The newly established grant program provides financial aid to qualified families and individuals residing in identified communities across Upstate New York.
Eligible expenses include essentials like rent/mortgage assistance, utilities, transportation, food, quality of life support, adaptive devices, medical care and more. 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. Suneel’s Light Foundation has committed $50,000 for the inaugural year of the program with plans to expand in the future based on the needs of applicants and the number of applications submitted this year.
The program is being administered by Jett Foundation, a national nonprofit headquartered in Plymouth, Mass., which works to empower people and families impacted by Duchenne muscular dystrophy through the development of transformative programming, educational opportunities, and ongoing support for every stage of a Duchenne journey. Jett Foundation was chosen to administer the program based on its experience in this area through its well-respected Emergency Fund program, which is open to New York families, and to provide a transparent and equitable application and selection process. Though Suneel’s Light Foundation will provide strategic insight to the new program, it wanted to ensure a seamless and unbiased program by having an experienced organization administer, especially one that has been supporting families in NY and across the region successfully for years.
Jett Foundation's extensive experience supporting families with Duchenne combined with Suneel's Light Foundation's generosity creates a powerful partnership. This collaboration will ensure Upstate New York families uninterrupted access to essential needs for families facing unforeseen challenges. Suneel’s Light Foundation is based in Buffalo, NY and developed the program to support Upstate families specifically based on the unique needs of these families and the significant economic means differential they have compared to other parts of the Empire State.
Duchenne muscular dystrophy is a progressive genetic disease-causing muscle weakness. Caring for a loved one with Duchenne presents unique challenges, and unexpected hardships can create a significant financial burden. Suneel's Light Foundation recognizes this struggle, and their grant empowers Jett Foundation to offer a lifeline to New York families in need.
To apply, eligible applicants must visit either the Jett Foundation’s website (www.jettfoundation.org/giving-fund/emergency-fund) or access the link on the Suneel’s Light Foundation’s. The link will direct you to the Jett Foundation’s Emergency Fund Application. In efforts to help families in need in real time, the application process will be rolling until funds are exhausted.
Impactful & Meaningful Partnership
"Thanks to Suneel's Light Foundation's generous support, Jett Foundation will be able to assist Suneel’s Light Foundation in their mission to be a needed safety net for Upstate New York families facing the daily challenges of caring for a loved one with Duchenne muscular dystrophy. This financial assistance will be a huge relief for families already under immense strain,” says Jett Foundation Executive Director, Eric Snyder.
“Suneel’s Light Foundation’s Support Fund was designed to be a vital lifeline for families struggling with financial obstacles associated with caring for someone with Duchenne’s and we are proud to support these amazing families across Upstate New York in their time of need,” said Tom Maher, President of Suneel’s Light Foundation President. “This program aligns with our Foundation’s ethos of enhancing the quality of life for those with Duchenne’s and we are privileged to have the Jett Foundation as a partner in this initiative, their expertise in grant giving will ensure that funds will be awarded to those most in need in a seamless way. We look forward to growing this program in the future and are privileged to be able to help our Upstate Duchenne’s community in our shared path of caring for those with inflected.”
The Support Fund paves the way for a brighter future for countless individuals with Duchenne and their caregivers across Upstate New York. Jett Foundation will continue to manage its Emergency Fund program for New York applicants, ensuring these vital funds reach those who need them most.
Upstate Counties included in the Brighter Days Community Support Fund are: Erie, Niagara, Chemung, Livingston, Monroe, Ontario, Orleans, Wayne, Yates, Madison, Onondaga, Oswego, Allegany, Cattaraugus, Chautauqua, Cortland, Genesee, Steuben, Wyoming, Seneca, Schuyler, Cayuga, Chenango, Broome, Tioga, Oneida, Lewis, Jefferson, St. Lawrence, and Tompkins.
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About Suneel’s Light Foundation
Established in 2002 in Western New York, Suneel's Light is a charitable foundation whose namesake is a teenage boy who has Duchenne Muscular Dystrophy. The Foundation was established to grow public awareness and fund critical research for treatments and a cure for Duchenne muscular dystrophy. Over the past two decades, the Suneel’s Light Foundation has raised more than $1.5 million to fund groundbreaking research aimed at treating, and ultimately curing, Duchenne Muscular Dystrophy and improving the lives of those affected by the disease. For more information about Suneel’s Light or Duchenne muscular dystrophy, please visit www.suneelslight.com.
About Jett Foundation
Since 2001, Jett Foundation, headquartered in Plymouth, Mass., has worked to empower people and families impacted by Duchenne muscular dystrophy through the development of transformative programming, educational opportunities, and ongoing support for every stage of a Duchenne journey. Jett Foundation is a registered charity with 501(c)(3) status from the IRS; all donations are tax-deductible. For more information, please visit www.jettfoundation.org.
To learn more about Jett Foundation’s Emergency Fund, please visit jettfoundation.org/jett-giving-fund/emergency-fund. To become a sponsor of our program, please email maura@jettfoundation.org.
Contacts:
Suneel’s Light Foundation
Benjamin Roberts - 716.510.5827 / benbradyroberts@gmail.com
Jett Foundation
Zac Bentley – 508-642-8895 / zac@jettfoundation.org
suneel's light: in the news
Amherst man's struggle with Duchenne Muscular Dystrophy told in graphic novel – with an assist from 'CSI' creator
Buffalo News (March 16, 2023) In the graphic novel "Soaring: A Story of Courage," Suneel Ram shares his joys, struggles and low points living with Duchenne Muscular Dystrophy, a rare genetic disorder.
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To tell his story, Ram, 26, of Amherst, spoke with Anthony Zuiker, the creator of the "CSI" television franchise, who turned Ram's accounts into the book.
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An interview with Dr. Neera Guilati, founder of Suneel's Light
WBFO (2019) Dr. Gulati tells us about her son, Suneel, 22, who has been living with Duchenne Muscular Dystrophy since age 2 1/2.
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Suneel's Light shines bright
WKBW (January 29, 2018) Suneel Ram loves hockey almost as much as he loves his hockey brothers. Suneel is living with Duchenne Muscular Dystrophy or DMD. It's a disease that only affects boys and right now there is no cure.
But Suneel, the namesake of Suneel's light Foundation, is looking to make a difference.
"It's important to raise awareness and raise money so we can help find a cure and make life easier for people with Duchenne," said Suneel...
Raising money and awareness for DMD
WKBW (November 4, 2017) "Suneel’s Light Foundation hosting its Night to Shine charity event in the Northtowns tonight….
The sole mission of the foundation is to raise money for genetic research that will lead to a cure for Duchenne Muscular Dystrophy and increase public awareness of the genetic disorder…"
FDA approves drug, but insurance won't cover it
Spectrum News (November 4, 2017) In September, the FDA approved a drug to treat DMD for the first time in the agency's history. While it's a major win for the families, they are now running into issues with insurance companies to cover cost of treatment...
12 local boys measured for robotic exoskeleton arms suffer from DMD
WKBW (August 22, 2017) Twelve local boys suffering from Duchenne Muscular Dystrophy (DMD) were measured for Wilmington Robotic Exoskeleton arms (WREX).
The disease carries a progressive weakness of muscles. While girls can carry the disease, it typically affects boys.
There is currently no cure, but the light weight exoskeleton device helps the person imitate normal human movements and improves their independence.
Our Liz Lewin profiled two boys who struggle with the disease. Their parents said their children have trouble with everyday tasks, such as brushing their teeth, eating, and writing.
The WREX arms are being donated by local non-profits, Suneel's Light Foundation and Glory Be To Kids.
Women in the city of good neighbors
Proceeds from the sale of this book support Suneel's Light Foundation.
Help Find a Path to Life for Children with DMD
By Tony Farina
Life comes with many challenges, but very few can compare to the pain faced by the parents of a child with a rare genetic disease for which there is no known cure and leads to early death.
At this time, there is no cure for children suffering from Duchenne Muscular Dystrophy (DMD). However, with dedicated medical research there is hope that someday scientists will find a way to overcome this deadly disease and give life a chance.
That's why we are asking for your help by contributing to research to find a path to life for Suneel Ram of Amherst, NY and other children across the country, mostly young boys, who are suffering from DMD. These children and their families live with the hope that someday a cure will be found.
The good news here is that you can help support the research that is needed to fight this disease simply by purchasing a colorful and decorative coffee-table book featuring photographs and brief biographical sketches of 42 of Western New York's most accomplished women.
The book, "Women in the City of Good Neighbors," was commissioned and published by the Suneel's Light Foundation with the hope of giving life a chance.
We all face challenges in our daily lives and we probably all know of someone close to us who is suffering from an illness and needs our love and affection to keep going. We do our best, but sometimes there's a chance to step up do something that could eventually save many young lives down the road. You have that chance right now.
As a parent, I know childhood diseases all too well and I can feel the pain of other parents who are living with children affected by diseases including DMD. I'm asking for your help with a small contribution to give life a chance for these children. I know you will feel better for it.
We are called the City of Good Neighbors and I'm asking that you respond to this call to arms to help give these children a chance to live. What could be more important than giving these children hope?
Thank you for the quick read and I hope that it tugs your heart in the right way and you can go to the website or make the call and contribute to this very worthy cause.
The cost of this beautiful keepsake book is only $20.00 plus $9.99 for shipping and handling.
Order online or call 716.243.0882.
Buy 1 book: $20
Buy 2 books: $25