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Reporter dances, raises money for WNY foundation

Posted: 8:55 AM, Sep 15, 2015
Updated: 2015-09-15 12:55:13Z

High above the soccer field at St. Joes Collegiate Institute, 18-year-old Suneel Ram is calling the shots.

"In the event of an emergency, we ask that you move quickly," Ram said over the public address system.

He's keeping peace in the stands as his mother Neera Gulati-Manning works tirelessly to raise awareness about a battle Suneel fights every day, against Duchenne Muscular Dystrophy.

"I want to raise enough funds so we can expedite clinical trial for the investigational agent, that is already in clinical trials in Europe, so the older boys can start reaping some of the benefits," Neera said.

There is no cure right now for Duchenne, a rare disorder that affects a number of boys around Western New York. Some boys won't live into their 20s. However, there are cases, according to the Muscular Dystrophy Association, of men living into their 40s and 50s.

Suneel spends much of his day in a wheelchair, but can still take steps independently. His mother says he loves to dance.

"Oh my God. He had such rhythm and, I mean, he danced better than anyone else in the family," Gulati-Manning said.

That's where the inspiration came from for a fundraiser called Suneel's Celebrity Gala. It's a "Dancing with the Stars" style competition where Yelena Tarasenko is painstakingly teaching reporter Ed Drantch how to dance the samba.

The goal is simpler than the dance steps being taught. It's all in an effort to raise money for an investigative drug therapy for Suneel and the others affected by Duchenne.

Samba is said to be one of the hardest ballroom dances to learn. It takes those unfamiliar with the dance out of their comfort zone.

"First rule of champions, never give up," Tarasenko said.

That's the attitude Suneel works hard to maintain. He's already looking forward to college, then a career, possibly in broadcasting or graphic art.

Thanks to fundraisers like Suneel's Celebrity Gala, his future is looking brighter every day. "I'm just excited, hopefully that it helps cure the disease as best it can," Ram said.

Suneel's Celebrity Gala is scheduled for November 6, at the Statler Hotel in Downtown Buffalo.

Viewers have the opportunity to vote for their favorite "star" by casting a ballot. Each ballot costs $1.

The money raised benefits the Suneel Light Foundation. To vote for Ed Drantch dancing the samba, click here .

 

 
 

 

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