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Interview with Jason Mills, producer of Whitby's annual "the Walk to fight Familial Ataxias" |
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| - by Pam Shortt of CAFA Central Branch - Article date: July 14th 2012 | ||||||
Jason himself has Friedreich's Ataxia. Friedreich's Ataxia is a very rare hereditary disease that affects approximately 1 in 50,000 people. He was unofficially diagnosed at the age of 18. During that time there was no genetic testing, no internet, no information, and no support groups. Jason is now 43 and had genetic testing done a few years ago to confirm his original diagnosis. Jason set up a website www.friedreichataxia.info, he showed the website to his brother Joshua. The two brothers began to discuss the fact that there was no community for people with Familial Ataxias to discuss day to day issues regarding the disease. In fact, they thought they were alone. Jason recalls it being his brother Josh's idea to host a fundraising walk , he agreed to help in the planning and the organizing of the event. Jason's only condition was that Josh was the MC and Jason was the organizer.
If they worked with organizations such as The United Way, who were able to give out tax receipts, there was still the issue of getting the money to Familial Ataxias research. The Group FARA, based in the USA, guaranteed the money would go to Familial Ataxias research but they could not issue Canadian tax receipts. After many weeks and many calls Jason was told about a small organization in Quebec called the Canadian Association for Familial Ataxias [CAFA]. Two questions entered Jason’s thoughts, firstly, "Do you raise money for Familial Ataxias research?" and then secondly, "do you issue tax receipts?" The answers were "yes" to both questions. A friendship was born between the brothers and CAFA!
Last year the printing company didn't begin printing Jason's 120 walk t-shirts until 8 pm the night before. Thankfully they were finished on time. The event itself is not difficult to plan each year, because the format of the walk is the same way every year. The difficult part is finding new corporate donors when Jason is the only one looking. If anyone can help Jason please send him an email at info@thewalktofightfa.com. The past three walks have been a great success! Jason has raised over 45 thousand dollars for Familial Ataxias research. This includes gifts, cash, online & corporate donations. All of the donations raised go to CAFA except for a small portion that is used to fund the event. The corporate sponsors cover all of the event costs.
This walk has become a national event. Walks take place in Quebec, British Columbia, and for the first time Saskatchewan. An agreement was made between the Mill brothers and CAFA that their logo would be used throughout Canada for walks of this kind. In the future Jason would love to see a walk of this type in every province to raise awareness of Familial Ataxias. The atmosphere at the walk is wonderful! It's more of a celebration. There is always lots of food, prizes, and entertainment going on as well as collecting money for a cause that is very important to Jason. Each year more people attend the walk as more awareness is raised. Last year there were 150 people, this year the brothers are hoping for 200. Anyone and everyone are welcome to attend the walk. You can bring your bike, roller blades, your dogs, strollers, walkers, wheelchairs or scooters to the walk. You can also come for lunch and get a free t-shirt. All this is a 100% free event, but a reminder, this is a charity event. Please register and download a pledge form at www.thewalktofightfa.com! "Having a chance to do this every year gives me a scene of community & helps to remind me that I am not alone in my struggles. After the event I always say to myself that I have done a good thing." - Jason Mills. |
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On September 22, 2012 at the Heydenshore Kawanis Park in Whitby Ontario, the 4th annual Walk to Fight Familial Ataxias is taking place. This is a walk that was started by Jason & Joshua Mills in hopes to raise awareness of Ataxia and to raise money for research to aid in finding a cure for this rare disease. 
One of the biggest challenges at the start was finding the correct charity to accept the money raised and have it assigned for Familial Ataxias research within Canada. It sounded quite simple, but in fact this was a show stopper! Jason and Josh knew they could raise money but knew they could raise even more money if they were able to give out Canadian tax receipts. 
Over the years Jason faced many challenges but one of the most difficult was when his brother Josh was sent to the UK for a two year work period. Jason was left to organize the event on his own. Josh was able to come back to Canada at the busiest point of the walk. Approximately 20 hours are spent on the walk during the final week. The final week is also the most stressful point. 
One of the sponsors pays for all of the food for the event. Every year Jason has bigger goals for the walk. This year he wants it to be the year that no one is left out, meaning that every person that attends the walk will go home with something in the form of a prize.
The 4th Anuual Walk to Fight Familial Ataxias Heydenshore Kiwanis Park, Whitby Saturday September 22, 2012 from 10 - 1pm The actual walk takes place between 11 - 12 pm. There are opening & closing ceremonies with lots of food & prizes. So get there early!
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