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Fort Macleod community powers A-T Children’s Project research

olive family

Rob and Crystal Olive push their children Alex (left) and Clark on the A-T Walk for a Cure on Saturday. Alex is diagnosed with the rare genetic disease.

Hundreds of people walked and cycled through the scenic Fort Macleod countryside Saturday morning in support of research into a cure or treatment for a rare, deadly genetic disease.
The 17th annual A-T Walk for a Cure raised $67,500 for research funded by the A-T Children’s Project.
“Seventeen years and the same great support,” organizer Conrad Van Hierden said. “You always wonder how it’s going to come together.”
Ataxia-telangiectasia, or A-T as it is commonly known, is described as having cystic fibrosis, cerebral palsy, immune deficiencies, muscular dystrophy and cancer all rolled into one.
Conrad and Rhonda Van Hierden launched the annual event at Hilltop Dairy when their son Randy was diagnosed with A-T, a rare genetic disease that attacks children, destroying their gross motor skills and weakening their immune systems.
The A-T Walk for a Cure, dedicated to Randy Van Hierden, who died in 2004, and five-year-old Alex Olive of Claresholm, who has been diagnosed with A-T, is crucial in terms of putting money into research and providing families with hope.
“It gives the families some hope and that drive to keep moving forward,” Van Hierden said.
Alex’s parents Rob and Crystal Olive are overwhelmed by the support each year for the A-T Walk for a Cure.
“It’s so encouraging, because a lot of the people here have no idea what the disease is but we do. We’re living it,” Olive said. “People keep coming and we can’t thank them enough. Words can’t describe how much we appreciate it.”
A growing number of cyclists are adding their support to the fund-raising effort.
Sixty-five cyclists took part in the A-T event this year, with 35 completing an 80-kilometre route to Head-Smashed-In Buffalo Jump and back to Hilltop Dairy, and the rest pedaling 50 kilometres through Fort Macleod and north to Granum before returning to the start.
“The first two years I did it by invitation only, because I had no experience organizing this kind of thing,” organizer Brendan Grant said.
With two rides under his belt, Grant put the word out on a broader basis and was rewarded with 65 cyclists — up from 22 in 2014.
Grant got involved to support the Van Hierden family.
“Conrad’s family has been close to my heart, Grant said. “He was one of my first bosses. I worked here while Randy was here. It’s close to my heart.”
“Conrad and Rhonda do all the organizing,” Grant added. “All I do is find the bikers and the support people. It’s a pretty easy job for me.”
Grant is optimistic the number of cyclists will continue to increase as people hear about the scenic venue and low-traffic roads.
“It was well received, and hopefully we see them again next year,” Grant said.
Van Hierden is grateful for the support of the cyclists.
“It adds something new,” Van Hierden said of the bike ride. “It’s another way the community can get involved.”
Rob Olive, who is with the RCMP in Claresholm, is also grateful.
“It’s got me excited,” Olive said. “I’m going to buy a bike and try it next year.”
Van Hierden said researchers are close to completing a drug compound that will alter how the ATM gene works, and make it produce ATM protein.
“Children with A-T have zero ATM protein because the gene is not producing it, so they have no DNA repair . . . and a real weak immune system,” Van Hierden explained. “They’re hoping the gene will be able to start generating some protein to repair what isn’t done now.”
Researchers also have the first animal model of a replicated genetic match for A-T. Seven piglets have the identical A-T match.
The research provides people such as the Olive family with much-needed hope.
“It’s getting hard for us because Alex is five and he’s right on the borderline of that first major decrease as the disease kicks in,” Rob Olive said. “It’s relentless. That’s why we have to do this, to stop that relentless takeover. It sounds very encouraging.”
Other clinical trials are under way.
“There is some huge improvements in the last two years, and it’s because of grassroots fund-raising,” Van Hierden said of events such as the walk and bike ride near Fort Macleod.
Rob Olive praised the Van Hierden family for leading the fund-raising.
The Van Hierdens, they’re fantastic,” Olive said. “We can’t be more thankful for them.”