Prince George moves to cure ALS
The fight to end one of the most devastating diseases a person can face returned to Lheidli T’enneh Memorial Park on Sunday.
The community came together for the annual fundraiser, now called the Moving to cure ALSto raise funds and awareness for amyotrophic lateral sclerosis (ALS) – also known as Lou Gehrig’s disease.
ALS is a rapidly progressive neuromuscular disease.
It attacks motor neurons that transmit electrical impulses from the brain to voluntary muscles in the body.
When they do not receive messages, muscles lose strength, atrophy and die. ALS can strike anyone at any time, regardless of age, gender or ethnicity. It does not affect the senses and only rarely affects the mind.
Before the walk began, Michelle Caden and her daughter Rhianna Robinson shared how they lost their son and brother Patrick Caden to ALS in 2021.
“I think it’s really important that we provide opportunities to share stories because stories are compelling, and they create space for us to connect with each other and know that we’re going through the same experiences and similar emotions and that we’re really able to create comfort and a relationship that we didn’t know existed before,” Robinson said, before introducing her mother.
“Patrick was 42 when he passed away and I was asked to speak about the impact it had on our lives. I have to say the biggest impact would be the future of Patrick’s daughter, my grand- daughter and all of our family. We know how terrible this disease is and I am so grateful to the ALS Society of British Columbia for helping people,” said Caden.
“They helped my son a lot. It was immeasurable. It’s been a little over a year and not a day goes by that we don’t miss him.
The annual event was suspended for two years due to COVID-19, but the return of the event also marks an important milestone in the journey towards a cure for ALS.
From 2019 to 2021, in partnership with the Province of British Columbia, the University of British Columbia and donors, $5.3 million has been raised to establish the Society for ALS Research Chair in BC ALS at UBC.
The ALS Professorial Chair will strive to create an optimal environment integrating research and clinical care. An initial goal of $20 million has been set, funded in part by proceeds from Move to Cure ALS.
Today, 60% of funds raised through the Move to Cure ALS initiative go to patient support programs – such as equipment loans, support groups, mobile clinics – and the remaining 40% funds are earmarked for this new research initiative at UBC, called Project Hope.
“And this is the first time in the history of this event that 100% of the proceeds will stay here in BC,” said Wendy Toyer, Executive Director of the ALS Society of BC.
“We believe we need to maintain the momentum to establish a world-class ALS center to create an optimal environment integrating research and clinical care.
Cariboo-Prince George MP Todd Doherty has served as co-chair of the ALC Parliamentary Caucus for five years and says the work has opened his eyes to this devastating disease.
“Over the past two years, we’ve seen we can move mountains when it comes to medical treatment, but here in Canada, we’re struggling to approve treatment for those battling this terrible disease,” Doherty said.
“We need to do everything we can to ensure that Canada can develop a rare disease strategy to give Canadians battling these diseases a fighting chance. I want you all to know that I am fighting with you, and we will do everything we can to raise awareness and fight in parliament.
Shirley Bond, MP for Prince George-Valemount, has also spent her career advocating for ALS research and spoke about the importance of the Hope Project.
“Here’s what we need: in British Columbia, we need clinical trials. There is no reason for families to travel to Montreal or Seattle. They should be able to do clinical trials here in BC and we need governments to speed up and speed up drug approval processes. They are too slow,” Bond said.
“Time is of the essence for all of you. My heart is so grateful to the families I have met, those here and those from across British Columbia.
After the opening speech, attendees were led by a bagpiper on a walk through the park, where they returned to celebrate the rest of the afternoon with music, a barbecue, activities for children, face painting and a silent auction.