Meet Edina's Hometown Heroes

Edina is made up of people who pride themselves with making the city a great place for living, learning, raising families and doing business.

Hayley Nilsen

April 2015 -- When 10-year-old Hayley Nilsen walks through the Mall of America, she does so with a different purpose than most. Friends and family converge with her there each spring for the Twin Cities area Muscular Dystrophy Association (MDA) Muscle Walk. The Bloomington event, one of nearly 120 such non-competitive charity walks held annually across the country, raises money for muscular disease research.

The cause is one close to the Nilsens’ hearts. Hayley lives with Charcot-Marie-Tooth (CMT) neuropathy, one of the 43 forms of muscular disease currently being researched around the world with the help of MDA funding. Like better-known forms of muscular dystrophy, CMT causes weakness and atrophy in the limbs.

As her mother, Jodi, can attest, Hayley does not let the condition slow her down. “With the help of leg braces, she is able to keep active and play all her favorite sports.”

Basketball tops that list for Hayley, as no one familiar with the Nilsen family will be surprised to learn. Her father, Matt, coaches girls’ basketball at Edina High School.

In 2013, the family decided to leverage their relationships with the Twin Cities basketball community to put on an innovative fundraiser supporting MDA. In partnership with Midwest 3-on-3, an extracurricular youth basketball league, the family hosted the first-annual “Hoops for Hayley” three-on-three basketball tournament.

“We raised about $4,000 for the Muscle Walk that year,” Jodi remembered. In 2014, that figure nearly tripled. “Last year, after registrations, a raffle and other donations, the tournament brought in $11,000 for charity.” According to the Muscular Dystrophy Association, the fundraiser cemented Hoops for Hayley as the top-donating team in Minnesota – and firmly within the top 10 nationally.

Hayley credits a special set of friends with much of Hope for Hayley’s success to date. “Firefighters [from the Edina Fire Department] volunteer to barbeque and sell concessions at the basketball tournament,” she explained.

Lt. Todd Porthan, who coordinates this volunteer effort, raves about the experience. “It’s good fun, and I really think we volunteers get more out of the day than those actually playing.”

“Hayley is energetic and upbeat,” he added. “I’m happy to help her out every chance I get.”

The International Association of Fire Fighters (IAFF) is the largest sponsor of the Muscular Dystrophy Association nationally, and many local departments “sponsor” a child, Porthan explained. The Edina Fire Department’s relationship with Hayley began three years ago, when Porthan and colleagues visited her elementary school to designate her as an honorary firefighter – complete with a set of custom gear.

In addition to the Hoops for Hayley tournament, Edina firefighters show their support each year by attending the Muscle Walk and by inviting Hayley to ride with them as a guest of honor during the Fourth of July parade.

Support, in all its forms, is greatly appreciated by Hayley, her family, and the 100,000 people directly served in some way by MDA each year.

Thanks to relationships like this, and community engagement like the Nilsens are achieving through Hoops for Hayley, the future is looking bright. MDA predicts that more drugs and other treatments will be developed for people with muscular dystrophy in the next five years than have been discovered in the last five decades.

1 of 47  Heroes

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