In Memory/Honour of Steve Hughes
Help Support Sarah on the Silk Road Mountain Race 2023 by Donating to ALS BC
On October 29th, 2015, my dad Steve passed away after a year and a half long battle with ALS.
To those who knew him, my dad was persistent, generous, and a hard worker. He loved to tell stories and was always happy to lend a hand, especially if it was any kind of home-maker project. He was an incredible father and loved to spend time collecting memories with his family. I am still in awe of how he gracefully navigated his journey with the disease, remaining composed, resilient, and good humored till the end.
He loved oysters, making silly faces, was a huge Habs (Montreal Canadians) fan, and loved to play hockey and ski. All in all, he had an adventurous soul, and cooked up some wild plans, from which I think I take after (just a bit!)
In August of 2023, I will be flying to Kyrgyzstan to bike the Silk Road Mountain Race and raise money in support of ALS. The SRMR is a grueling 1,880-kilometer race through the mountains of Kyrgyzstan (bordering Uzbekistan, Kazakhstan, and China) with over 30,000m in elevation gain. While deemed one of the world’s “toughest bikepacking races”, my motto, however, is “nothing will ever be as hard”, and this is in reference to seeing Dad suffer and pass away due to ALS.
All proceeds donated to this initiative will be spilt 50/50 between the ALS Society of British Columbia’s Client Support Services and the ALS Society of Canada’s National Research Program.
The ALS Society of British Columbia is an incredible community organization that provided my family and others like ours with a support network and vital equipment including wheelchairs and mechanical lifts, free of charge, allowing us to manage Dad’s care at home for as long as was possible. For context, the care and equipment cost of ALS to a family is on average between $150,000 – 250,000.
The ALS Society of Canada’s Research Program funds high-quality research to find treatments and hopefully one day a cure for the disease. While there are a handful of medications that can help slow the disease, currently there is no cure and 80% of people with ALS will die within 2-5 years of diagnosis accounting for approximately 1000 deaths per year in Canada.
While I will never be able to fully comprehend the struggle my dad and other patients with ALS experience, it is my hope that together we will be able to help promote awareness about this underserved disease and raise funds to help one day end it.
Thank you everyone for your incredible support,
Sarah Hughes
