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Virtual run to raise awareness, funds for rare genetic disease

Crystal Olive and her son Alex will host Breaking 4 A-T, a virtual three-kilometre run to raise awareness and funding of Ataxia-Telangiectasia, a rare genetic disease.

Crystal Olive wants to raise awareness and funds to cure Ataxia-Telangiectasia, or A-T, a rare genetic disease that her son Alex has.

To that end, on April 29 Olive will set out from Fort Macleod and run 42 kilometres to West Meadow school in Claresholm, where Alex is a student.

A-T affects co-ordination, and causes immune deficiencies and high rates of cancer.

Olive said Alex was part of a drug trial in the United States where once a month he received a low-dose steroid to slow the progress of the disease.

Alex was responding to treatment and was walking but, due to COVID-19 health restrictions, they had to pull out of the trial in March.

Now, everything the doctors said would happen has happened and Alex has full-blown A-T.

Alex has gone from walking to using a walker and wheelchair.
Alex went back to school in the fall where he uses a walker.|Alex also wears a Fit Bit that keeps track of the steps he walks a day.

On average, Alex walks about 4,200 steps a day.

“It’s literally like running a marathon,” his mom said.

At the same time, Olive was thinking about how they could raise awareness and funds for A-T.

For years, the family has held a fund-raiser just outside Fort Macleod, but that has been derailed by the pandemic.

“How can I make a difference?” Olive thought.

So she created Breaking for A-T, in honour of Alex Olive benefitting the A-T Children’s Project Canada.

Olive is inviting everyone to take part in a three-kilometre virtual walk or run between April 22-29.

Olive noted three kilometres is about 4,200 steps, the distance Alex walks every day.

The event is free to enter and donations are encouraged.

Olive will run 42 kilometres from Fort Macleod to West Meadow school.

The idea took root last year after Alex went off the drug trial, and the pandemic sunk in.

Crystal Olive decided to do a backyard ultra race where the idea is to run 6.71 kilometres every hour on the hour until you can’t.

“I ran 11 hours on my treadmill with very little training,” Olive said.

Since then, Olive has signed up with a trainer. She now has a coach who has developed a training plan for her where she runs varying distances and paces six days a week.

“I’m going to try and break four hours,” Olive said.

When she researched doing this run, she looked at the finish times and race statistics of four big marathon runs in Canada.

Olive discovered only 24 per cent of runners who finish broke four hours.

“I thought that would be a good goal to shoot for,” Olive said.

Anyone interested in participating or more information can visit https://www.atcp.org/event/breaking4forat (no dashes or spaces).

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