SUneel's Light

716.243.0882

info@suneelslight.org

275 Northpointe Parkway

Suite 50

Amherst, NY 14228

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News and Events

Thank you to everyone who supported the 2018 Night to Shine!

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 $40.00 plus $9.99 for shipping and handling. 

Order online or call 716.243.0882.

Buy 1 book: $49.99
Buy 2 books: $99.98

research news

Binghamton University to use $329k grant

for research on Duchenne Muscular Dystrophy

Dec 26, 2018: Kanneboyina Nagaraju, professor and chair of the department of pharmaceutical sciences, and his team at Binghamton University’s School of Pharmacy and Pharmaceutical Sciences will continue their work examining the body’s immune response to the production of new dystrophin protein resulting from “exon skipping” and gene-therapy treatments. 

Click here to read the entire article. 

suneel's light: in the news

SUNEEL'S LIGHT SHINES BRIGHT

NIAGARA COUNTY, N.Y. (WKBW) - 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 awareness and money for dmd research

BUFFALO, N.Y. (WKBW, Nov. 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…"

BUFFALO, N.Y. (Spectrum News, Nov. 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

BUFFALO, N.Y. (WKBW) - Twelve local boys suffering with Duchenne Muscular Dystrophy (DMD) were measured for Wilmington Robotic Exoskeleton arms (WREX).

 

The disease is 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. 

See WKBW.com to watch interviews or @LizLewin7 on Twitter for more information.

WREX Arms: Life-Changing Devices for 12 WNY Boys

From Spectrum News, August 22, 2017
 

BUFFALO, N.Y. -- 12 boys with Duchenne muscular dystrophy were fitted for life-changing devices in Buffalo Tuesday morning through donations from local organizations. Each boy was fitted for state of the art Wilmington Robotic Exoskeleton arms, which utilize a system of rubber bands to eliminate the gravitational pull on the extremity.

 

The WREX arms improve the quality of life for the wearer, with most boys experiencing a range of motion that they had not had in years.

The donations were made in part by Suneel’s Light Foundation, along with Glory Be To Kids.

 

"It's been an extremely wonderful and inspiring experience to see boys who haven't been able to raise their arm off the armrest of the wheelchair for years, and now they're able to say 'high five' and wave to the crowd. But it's also everyday life, brushing your teeth, scratching your nose, fixing your glasses on your nose. Things that they've always needed assistance," said George Hajduczok, Suneel’s Light Foundation.

 

All 12 boys are set to receive the devices within the next few weeks, just in time for the start of the school year.

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help us support the brave families affected by dmd

There are amazing scientific discoveries happening every day. Your generosity helps support the scientists and their work.

Promising new therapies include exon skipping, nonsense mutation suppression, myostatin inhibition, anti-fibrotics, utrophin production and stem cell therapy.

Clinical trials provide needed research for the development of new drugs, biological products, and medical devices. 

On average, it takes 10+ years for a new drug to progress from an idea to FDA approval.

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