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Promising drugs could help Suneel’s battle with Duchenne muscular dystrophy

WBFO News photo by Eileen Buckley

A special gala will be held Friday evening to raise awareness and funding for Suneel's Light Research Foundation. The organization was named after Suneel Ram. Since the age of three, Suneel, now 17, has coped with Duchenne Muscular Dystrophy.

Suneel Ram sounds like a typical teenager bickering with his mother.  Suneel appeared on our studio with his mother, Dr. Neera Gulati.  Suneel and his mom were very willing to talk about his disease and how they cope with it. 

Credit WBFO News photo by Eileen Buckley
Dr. Neera Gulati in the WBFO studio.

Duchenne is a genetic childhood disease that affects one in every 3,500 boys.  It causes muscle degeneration and weakness.  Suneel is among the 20,000 boys here in the United States with Duchenne. 

Dr. Gulati has worked to raise needed funding for research and treatment.

"We really saw that research was key to helping us find effective treatments for Duchenne muscular dystrophy and for me, personally, the public awareness aspect was really important to me," said Gulati. 

Beyond dealing with the physical effects of this disease Suneel is striving to be a teenager.  He just started his junior year at St. Joseph's Colligate Institute in Kenmore. It's a school where Suneel has been given the opportunity to be a part of sports broadcasting, helping to announce the scores at St. Joe's games.

"I announce like scores, touchdowns," said Suneel. "I say like score by so and so."

Suneel would like to pursue sports broadcasting when he heads to college, but he also likes video and animation.

"I want to make my own company. Something to do with videogames and like animation," said Suneel.

Suneel is able to walk, but uses a motorized wheel chair to make things a little easier. He is a very small for his age and looks younger than 17.  This summer has been tough. Suneel has been a bit depressed and felt isolated from friends and other teens.

"Usually I'm doing things by myself. It rarely happens that someone asks me 'hey do you want to hang out or do something', I always have to do it," said Suneel. "Sometimes I feel like I'll just have to be alone. I know it's not like their purposely trying to hurt me."

Suneel's Light Research Foundation his mother. Friday night the Foundation will host a celebrity gala at Statler City downtown featuring local Buffalo celebrities that will appear in a ballroom dance competition to raise funding for future research.

"The research has really blossomed. We have a number of clinical trials going on all over the world. The exon skipping is a new type of technology that Suneel's Light did also contribute to," said Gulati.

Gulati serves on a  national steering committee.  She was a strong supporter of the Fast Act and helped write draft guidelines for the FDA.

"To say that we want safe, fast access to therapies for our boys," said Gulati.

Dr. Gulati's personal fight has led her to become a national voice on discussions for clinical trials and treatments. 

While there has been significant progress with clinical trials in drugs used to fight the effects of the disease, it's never fast enough for Duchenne families.   Many die before they reach their 20s.  

"We need at least 15 to 20 years of research, so we don't have that length of time," said Gulati.           

WBFO News asked Gulati what the outlook is for her son's future.

"My hope is that exon skipping drugs will be on the market within six to eight months. My hope is that Suneel would have access, as I would want all the boys to have access," said Gulati.

The drug is already in clinical trials in London and Japan.

Suneel's message to the public about copying and research for the disease.  

"I think it's important for all boys, because it's important -- it's serious," said Suneel.    

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