news & Events
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.
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.
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.
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