Lock-up to help fight muscular dystrophy

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PHOTO BY MEGAN KNOWLES

A Muscular Dystrophy Association Lock-up participant gets his picture taken as part of the event. “Jailbirds” then send these photos to loved ones, asking that they bail them out to raise money for the organization.

On March 29, getting locked up will actually be a good thing.

The Muscular Dystrophy Association of Northern Indiana is hosting an MDA Lock-up that day at The Charles, 3127 Carroll Road, Fort Wayne.

“Jailbirds” volunteer or are nominated and raise funds to help send children with muscular dystrophy to camp in Wolcottville, MDA of Northern Indiana Fundraising Coordinator Valerie Churchill said.

The MDA sends about 50 kids to the camp each year at a cost of about $2,000 per camper.

“This is the week where they have the opportunity to see old friends that they’ve met in previous years, they have dances, archery, (an) art barn, fishing, karaoke and horseback riding,” Churchill wrote in an email. “This is the best week of their year is what I hear the kids say over and over.”

But the MDA isn’t all about fun and games. The organization also helps fund research to find treatments and a cure for muscular dystrophy.

And they’re making strides: In 2016, three new medications – emflaza, spinraza and eteplirsen – were approved by the FDA for the treatment of the disease. One of those drugs, eteplirsen, has been in the works for 20 years, according to the MDA’s website.

The MDA also supports a clinic at Lutheran Hospital that Churchill said is “a one-stop shop” where youth with muscular dystrophy can see a neurologist, get their wheelchair repaired and more.

“(It’s all in one place) instead of having different appointments, so it makes it kind of nice for them,” Churchill said.

Overall, the MDA helps more than 700 people in northern Indiana, MDA of Northern Indiana Executive Director Sonja Cronin said.

MDA Lock-up jailbirds begin their day getting their mugshot taken, complete with bars. They then send messages and their photo to friends and family, asking that they help them post bail.

Jailbirds are encouraged to fundraise in advance, however, Cronin said, so they can meet their bail, which will be $3,200 for Fort Wayne participants on March 29.

Jailbirds are treated to food while they fundraise, and are given a plaque once they meet their goal.

“It’s kind of a crazy, fun-filled day. It’s a lot of energy,” Churchill said.

The goal is to have 300 participants at the March 29 event, she said, adding she had more than 70 signed up by Feb. 23.

The lockups are only a small part of what the MDA does for fundraising, Cronin said, adding they facilitate more than 100 events across the region annually.

Other events include the organization’s Muscle Walk, which takes place April 22 at Parkview Field, and its inaugural gala, which will take place June 2 at the Parkview Mirro Center.

The gala will be a “black tie formal” affair, Cronin said, complete with cocktail hour, hors d’oeuvres, Asian-infused dinner and live music by the Alicia Pyle Quartet – all to benefit those with muscular dystrophy.

Bill and Dawn Boggs know a thing or two about raising money for the MDA. They oversee a successful muscle walk team that puts on an auction, its own 5K and a bowling event to raise funds for the cause.

Last year their team was the fourth highest earners in the country, Bill Boggs said.

While he has muscular dystrophy himself, Bill Boggs said he raises the money for the kids.

“(The MDA is) a very good support system. It’s a great organization, it’s a good cause,” he said.

HOW TO HELP

To sign up for the Lock-up, gala or Muscle Walk, email Valerie Churchill at VChurchill@mdausa.org or call (260) 486-6698 or visit https://www.mda.org/get-involved/participate-in-an-event.