Dancing for Duchenne: 3 area bands to perform benefit for Saxtons River family

Thursday March 21, 2013

BRATTLEBORO -- Laurie Webb wanted to put on a benefit for her grandsons with Duchenne Muscular Dystrophy. And, fortunately, she knows plenty of musicians.

Webb was able to recruit three area bands -- Wyld Nightz, Pretty Daddy and Otis and the Elevators -- to perform at an event scheduled for Saturday at the American Legion. "Dancing for Duchenne" is set to begin at 7 p.m. and raise money for a trio of charities dedicated to helping those affected by DMD.

Webb's daughter, Jenn McNary, has six children, two of whom suffer from Duchenne, an ultimately fatal degenerative muscle disease that affects roughly 20,000 children in the United States. Both Austin and Max Leclaire use the support of their family to live independent and productive lives, though their rare condition makes it a challenge. Max, 11, was eligible for a medical trial of Eteplirsen, a drug that greatly improved his quality of life. But Austin, 14, did not qualify and his condition has gotten progressively worse without the treatment. Max is able to walk while his older brother gets around in a wheelchair.

There is a suggested donation of $20 per person for Saturday's event and McNary said her entire family is attending in addition to former classmates of hers and her mother and some of her sons' friends. It is a child-friendly event.

McNary said it is touching to know so many people are willing to help one family.

"It feels really great. We've never asked our community for help and this is the time we've decided to do it. It will be a great time," she told the Reformer.

McNary also said the musical acts lined up prove cash isn't the only way to provide support for a cause you believe in. She said everyone has talents or abilities that can help others.

"You don't have to have a lot of money to do something that could support our event," she said.

Jeff Brewer, who plays guitar and banjo for Wyld Nightz, said he was first approached by Webb, who asked him to assist in a fundraiser for her grandsons. He said they used to work in the same building together. Brewer said he was on board right away and quickly asked his bandmates, who were happy to contribute.

He said he has a special place in his heart for children affected with muscular dystrophy. He spent three summers as a teenager taking care of a person with a type of the condition. Brewer grew up in Proctor and worked at a summer camp in Goshen, where he helped a resident from New York who was confined to a wheelchair as a result of his disease.

Mike Auerbach, of Pretty Daddy, said he and Brewer were talking together when Auerbach learned of the event.

"We're friends of some of the other musicians and we were happy to lend a hand," he said. "In a small community, we all have to help out any way we can."

The charities to benefit from the event are DMD Hero, a non-profit foundation dedicated to supporting awareness of Duchenne and advocating for people affected by the disease, as well as Darius Goes West, a nonprofit that supports research for a cure for DMD, and Northeast Disabled Athletics Association, a Burlington-based entity that provides athletes with physical disabilities the opportunity to participate in sports.

McNary said the family needs money for their lobbying efforts, as they have already made one attempt to petition the U.S. Food and Drug Administration to expedite the approval of Eteplirsen, the drug that has helped Max. McNary and Austin traveled to Washington, D.C., in February to advocate for the "miracle drug" with the assistance of U.S. Rep. Mike Fitzpatrick (R-Pa.).

Webb said a cash bar and light snacks will be provided. The snacks will be donated by Shaw's in Walpole (N.H.), Price Chopper and Hannafords in Brattleboro and The Grafton Cheese Company.

Door Prizes and Raffle prizes donated by area businesses: Justin Ferland Photography, Vermont Artisans, Burdick's Chocolates, Agway of Walpole, Bellows Falls House Bakery, Lark's fine women's accessories, Mr. G's, Artist Corey Armprester, Turn it Up, Walpole Village Salon, Baker's Hallmark, Real to Reel and Fireside True Value. Restaurants that have donated prizes include the Chesterfield Inn, Peter Haven's, Fireworks, The Marina, The Walpole Tavern, Champ's and Thin Crust Pizzeria.

Domenic Poli can be reached at dpoli@reformer.com, or 802-254-2311, ext. 277. You can follow him on Twitter @dpoli_reformer.


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