Cultural
10:16 am
Tue January 29, 2013

Local celebrities to compete in ballroom dance-off for Duchenne Muscular Dystropy

This Friday, eight local celebrities will be dancing at the Suneel's Celebrity Gala at Statler City in a fundraiser for Duchenne Muscular Dystrophy. The gala is designed much like a "Dancing with the Stars" competition. WBFO's Eileen Buckley talked to event organizers and one of the celebrity dancers about this light-hearted event for a very serious disease. 

"We're very much closer to finding a cure for this disease," said Buffalo lawyer David Smith, co-chair of the celebrity gala. He has served on the Suneel's Light Foundation board for eight years.

The foundation is named after a local teen, 15-year-old Suneel Ram, who sufferers from the disease.

"Generally, with this particular disease, it is a muscle wasting disease.  The body doesn't produce the protein Dystrophin that's necessary to maintain and build your muscles," said Smith. 

Without that dystrophin protein, muscle weakness will occur.  It usually effects boys, with most dying in their early 20's.

"Boys, generally by the time they reach their teens, have lost their ability to ambulate and walk around as they normally would and are wheelchair bound in their late teens.  In their mid to late 20's they unusually pass from respiratory or heart failure as a result of the muscle weakness and the wasting of the muscle," said Smith.

According to the foundation, more than 20,000 children in the nation suffer Duchenne.

"What I've learned is there are a number of local families with children effected," said Smith.

As part of the ongoing fundraising for Duchenne research, Smith decided to create this celebrity gala competition because also has a passion for ballroom dancing.

Over the last six years Smith has been taking lessons with professional ballroom instructor Lihann Jones.

Dave Smith & Lihann Jones practice a swing dance
Credit WBFO News photos by Eileen Buckley

"It's a perfect fundraiser.  It's really a perfect event," Jones is co-chair of the event.  Both Jones and Smith came up with the  concept  and developed it into this Friday's gala.

"A lot of people have been so involved and interested in ballroom dancing for years now and this just seemed like a perfect opportunity to get dancing, ballroom dancing, fundraising for a very good cause," said Jones.  "Putting this together is just going to make it very important to get people more involved."

And that involvement not only includes the celebrity dancers -- but area ballroom studios donating teachers and lessons. 

Dave Smith & Lihann Jones practice swing dance
Credit WBFO News photos by Eileen Buckley

"Every celebrity has one dance. They will be competing against another celebrity performing the same dance. So you will have eight dances. We will get to see everybody in a row. The audience will vote on who they think is the best.   

You can also vote online for your favorite celebrity and watch their progress.

"The judges will vote as well. We'll also tally in the online votes and then you will see everybody perform and you will see who is the winner," said Jones.

You might be surprised to find the leader of the Buffalo Zoo practicing steps to the Cha-Cha at a ballroom studio. 

Buffalo Zoo president and CEO Donna Fernandes
Credit Photo from video of Fernades ballroom lessons

Zoo president and CEO Donna Fernandes is one of the eight celebrities that accepted the dance challenge.

Fernades said she is forced to step out of character for this performance.

"Well I had done dancing like 15 years ago, and it was the Cha-Cha. So I thought it would be very similar to that, but in these performances its a lot more show steps and a lot more show steps, and a lot more prancing and poising then just dancing," said Fernandes. "I'm not a very flamboyant person, and so a lot of what he is proposing to do feels very unnatural."

Fernandes has one of the more challenging dances to learn.

" It is and it is a very fast beat too," said Fernandes.

Another celebrity dancer is former Erie County Executive Joel Giambra. 

Joel Giambra taking his ballroom lesson
Credit Photo from video of Joel Giambra's ballroom lesson

You can also watch Giambra and the other local celebrities on line. 

And although in the television hit  Dancing with the Stars teachers celebrities how to dance, you might recall the famous 1980's movie Dirty Dancing that featured ballroom dancing.

Teacher Jones says that is very relatable.

"Everybody has frame. They know how not to have spaghetti arms and keep space between them, and they all fell in love with Patrick Swayze.

And remember, Friday night "no one puts baby in the corner."

Suneel's Celebrity Gala starts Friday night at 6 p.m. at Statler City in downtown Buffalo.  You can learn more at Suneel's Celebrity Gala