Until he was diagnosed with ALS in 2016, Alan Medcalf spent his adult life “in love with movement.” He was a snowboarder, cross-country skier, unicyclist, cyclist and competed as a runner, swimmer and triathlete. After a second hip replacement he cycled coast to coast across Canada in 2000 and logged over 100,000 km in the ensuing 15 years.

Alan on Brockville's bicycle pump track
Alan on Brockville’s bicycle pump track

Everything changed when Alan was diagnosed with ALS three years ago. Now he says he will be happy if he can complete the 5km Walk to End ALS in Smiths Falls with the aid of his walker.

Accepting his physical limitations and the knowledge that ALS is terminal has precipitated some deep soul-searching and inner reflection. Alan acknowledges the impact of ALS on his life and he admits there are times when his disease and its encroachment on the lives of those around him feels “entirely unfair and all too arbitrary.” Even so, ALS does not define him.

“I accept my ALS as an unavoidable partner in my journey rather than something I would squander energy to fight,” he says. “This is acknowledgement, not surrender. I have no bucket list, instead choosing to celebrate a wonderful journey this far. I choose to focus on my remaining journey rather than the destination, finding ways to help make a difference in the world we share.”

Alan and wife Celia (left) and daughter Robin (right) at 2017 Walk in Smiths Falls
Alan and wife Celia (left) and daughter Robin (right) at 2017 Walk to End ALS in Smiths Falls

Alan continues to find meaningful ways to embrace his journey with ALS and currently does so by serving on ALS Canada’s Client Services Advisory Council and participating in the Walk to End ALS. He’s also committed to supporting people and families living with ALS within his own community and is co-facilitating, along with another client, a newly formed peer-to-peer ALS support group for families in the Brockville area.

This year, his “A-team,” including his wife, Celia, daughter, Robin, and her family will lead the Walk in Smiths Falls. There will be much to look forward to: connecting with others living with ALS, sharing stories of strength and perseverance, and finding comfort in the embrace of people who care. “Attending the Walk reminds me that I’m not alone,” says Alan. “There’s a whole community of support out there.”

Alan and Grandchild at a farmers market in Brockville, before his diagnosis

An active volunteer for many years, Alan now focuses his energy on raising awareness about ALS and helping to fund important research and critical support services – provided by ALS Canada – for people and families living with ALS in Ontario. He says he feels confident in the organization’s professionalism and its effective and efficient use of funds, citing ALS Canada’s accreditation from Imagine Canada as just one example of evidence of ALS Canada’s solid credibility in the not-for-profit sector.

Alan is particularly interested in supporting leading Canadian ALS research to sustain hope for a future without ALS. He says he has learned a lot about the current state of ALS research watching ALS Canada’s webinars hosted by VP Research, Dr. David Taylor. “The amount of research and the number of clinical trials underway is just mindboggling compared to even just three or four years ago. The millions that ALS Canada has invested in that research all comes from fundraising – with a good chunk of it coming from the 2014 ALS Ice Bucket Challenge – so we must keep up the effort to bring in more money. It’s the only way to change the future.”

“Living with ALS,” says Alan, “you don’t ever want anyone else to be diagnosed with it.” That’s why he agreed to participate in a focus group last year that helped to inform ALS Canada’s submission to the Canadian Agency for Drugs and Technology in Health at the time that edaravone was being reviewed. Alan provided his perspectives with the intention of contributing to something that might help others down the road. In the face of this cruel and unrelenting disease, that spirit of giving is what we need to spread from one end of the country to the other – right now.

The Walk to End ALS takes place in over 90 communities across Canada until September 2019. Register or donate to a Walk to End ALS near you at www.walktoendals.ca.

Your fundraising efforts and generous donations support the best ALS research in the country and enable ALS Canada to provide community-based support to people and families living with the disease in Ontario. Donations for all Walk to End ALS events are being accepted until December 31, 2019.

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