Members of the Fort Macleod Fire Department in full turn-out gear lead the 2023 A-T Walk for a Cure.
Southern Alberta came together to help a Fort Macleod family raise more than $90,000 for research into a cure or treatment for a rare genetic disease.
The Van Hierden family’s A-T Walk for a Cure got a welcome boost from some American friends.
Braun Madison, who has A-T, and his mother Amy raised close to $25,000 for the fund-raiser.
Braun Madison, who lives in San Antonio, Texas, was a friend of Rhonda and Conrad Van Hierden’s son Randy, who also had A-T.
“When they came down to San Antonio to visit us, me and Randy immediately has a pretty good friendship,” Madison said Saturday at Hilltop Dairy. “Ever since he passed I’ve been wanting to come up here to give a hand. This year it just worked out.”
Ataxia-telangiectasia, or A-T as it is more commonly known, is a rare genetic disease that typically attacks children and is described as having cystic fibrosis, cerebral palsy, immune deficiencies, muscular dystrophy and cancer all rolled into one.
Randy Van Hierden died in 2004 from complications caused by A-T.
Madison and his mother joined more than 100 people for the 25th A-T Walk for a Cure and undertook fund-raising of their own to support the event.
People collected pledges and walked, ran, biked and rode horseback on the two- and five-kilometre routes west into the countryside from Hilltop Dairy and returned for an after party.
The A-T Children’s Project is a cause near and dear to the Madison family’s heart.
Braun, 42, and his siblings Jamie and Andy all have A-T. Their bodies produce some ATM protein and as a result there were older than people normally are when diagnosed.
“Because we have a mutation of the gene we didn’t exactly present right away,” Braun said of the diagnosis. “Because all three have the mutated version of the gene we all kind of have different symptoms.”
All three siblings have required wheelchairs for a number of years.
“We still lift weights and swim and things like that,” Braun said. “We just kind of work with what we have.”
The Madison family stage fund-raisers in Texas on a yearly basis until 1999 when A-T made it difficult for them to undertake the exhaustive projects.
“We had a lot of younger folks come up and pick the ball up and run with it,” Madison said. “It’s kind of taken the pressure off of us. For a while we were the only ones doing this kind of thing.”
When Braun and his mother decided to come to Fort Macleod for the 25th Walk for a Cure, Team Madison began fund-raising.
“It’s still coming in, but so far it’s going good,” Braun said.
Encouraging research is ongoing around the world into a treatment or cure for A-T. so fund-raisers are vital to keep that work going.
“It’s very important,” Braun Madison said. “I like to say it has raised awareness. The more people that we can educate as far as the specifics of the disease the more people we’ll have to potentially help, which is awesome because we need all the help we can get.”
“Whether or not it benefits me, specifically, that’s not why I’m doing it. I’m doing it more to benefit others and I think that’s what this kind of event does.”
