Loss and healing: A 900-km bike ride to drive ALS awareness

Miles4Matty is part of Adam Foley’s search for meaning after losing his brother, Matthew (aka Matty), who passed of ALS in 2014 at the age of 38. Adam and Matthew were roommates at the time of the diagnosis. When Matthew’s mobility became a significant challenge, they moved into a more accessible apartment together where Adam continued to be his caregiver. When Matthew chose to move out on his own and become a resident of Artscape’s Wichwood Art Barns, Adam stayed nearby.  Matthew’s passion was photography, and this move allowed him to live among fellow artists who shared his passion for art and creativity.

Sharing such a close bond and witnessing his brother’s physical decline as the disease progressed was harrowing. “When I was struggling, cycling was an outlet for me,” says Adam, “a time to leave it all out on the road and prepare myself for what was coming next.”

Now Adam is pedaling to make some sense of all that has happened. He believes in aiming high. He’s taken a break from work to focus full-time on spearheading a 900-km bike ride to generate awareness around ALS and raise $12,000 to help ALS Canada invest in promising research and essential community-based support services for people living with the disease in Ontario.

“Awareness is the long game,” explains Adam. He says it’s crucial for people to know more about ALS because that will ultimately drive fundraising. “People may not truly appreciate how devastating it is for families, and I want people to understand how badly patients and families need support because ALS takes, takes, takes… There’s not enough you can do to try to stop this vicious disease.”

Adam will not be alone on this journey as he’ll be riding alongside his good friend Geoff Agnew while their support vehicle will be “captained”’ by Adam’s other brother Sean. “Maybe it will be cathartic, a way to process my grief,” says Adam. “When you follow your gut and listen to your heart, there isn’t always a defined reason, rather a feeling that you know it’s the right thing to do.” Sean, who will be providing backup support, is looking forward to “being a witness and being of service on this pilgrimage and helping to spread awareness about ALS.”

Miles4Matty will take Adam and Geoff from Heritage Field, site of the original Yankee Stadium, to downtown Toronto in approximately nine days. The ride coincides with ALS Awareness Month in Canada (June) and will overlap with the 80^th anniversary of Lou Gehrig Appreciation Day on July 4th, a day that honours the famous Yankee first baseman whose name became synonymous with the disease. The connection with baseball also resonates because the Foley brothers grew up following the Toronto Blue Jays, attending games at Exhibition Stadium before they could read. Beginning the ride where Lou Gehrig rose to fame and ending at the Blue Jays’ home city adds another layer of meaning for Adam and Sean.

Living close to the effects of ALS often shifts people’s perception of time. “My brother’s ALS made me angry that his time was cut short,” explains Adam. “I guess it’s made me slow things down, appreciate the moment and be more aware.” He also feels a deep sadness for what he has lost. At 41, Adam is a father for the first time. Knowing Matthew won’t be there to watch his 17-month old son, Nolan, grow up has left a huge chasm.

For Adam, Geoff and Sean, this is the right time to step up and help drive momentum forward while remaining hopeful that new treatments can alter the course of the disease for the better. Adam is hopeful for a cure that will end ALS altogether. Sharing his story from a place of authenticity is a starting point. Raising money will also provide support to people and families living with ALS in Ontario.

There will also be room for insight. Miles4Matty will give Adam and his team ample opportunity to reflect through Matthew’s lens: “He had a great gift for seeing beauty in objects and moments that some of us might overlook.”