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‘We know how awful this disease is’: Prince George moves to cure ALS

The walk is raising money for a ground-breaking UBC research initiative

The fight to end one of the most devastating diseases a person can face returned to Lheidli T’enneh Memorial Park Sunday.

The community gathered for the annual fundraiser, now called the Move to Cure ALS, to raise money and awareness for Amyotrophic Lateral Sclerosis (ALS) – also known as Lou Gehrig's disease.

ALS is a rapidly progressive, neuromuscular disease.

It attacks the motor neurons that transmit electrical impulses from the brain to the voluntary muscles in the body.

When they fail to receive messages, the muscles lose strength, atrophy and die. ALS can strike anyone at any time, regardless of age, gender, or ethnic origin. It does not affect the senses, and only rarely does it affect the mind.

Before the walk began, Michelle Caden and her daughter Rhianna Robinson shared the story of how they lost their son and brother Patrick Caden to ALS in 2021.

“I think it is really important we are providing opportunities to share stories because stories are compelling, and they create space for us to relate to each other and know we are going through the same experiences and similar emotions and really are able to create comfort and a relationship we never knew existed before,” said Robinson, before introducing her mother.

“Patrick was 42 when he passed away and I was asked to address how it impacted our lives. I would have to say the biggest impact would be the future for Patrick’s daughter, my granddaughter, and for our whole family. We know how awful this disease is and I’m so grateful to the ALS society of B.C. for the help they give people,” said Caden.

“They helped my son a lot. It was immeasurable. It has been just over a year and there isn’t a single day that goes by that we don’t miss him.”

The annual event was on hold for two years because of COVID-19, but the return of the event also marks a significant milestone in the journey to finding a cure for ALS.

During 2019-2021, in partnership with the Province of BC, University of British Columbia and donors, $5.3 million was raised to establish the ALS Society of British Columbia ALS Research Professorship at UBC. 

The ALS Professorship will strive to create an optimal environment integrating research and clinical care.  An initial goal of $20 million has been set, funded in part from the proceeds of the Move to Cure ALS.

Now 60 per cent of the funds raised during the Move to Cure ALS go towards patient support programs – like equipment loans, support groups, mobile clinics – and the remaining 40 per cent of the funds go towards this new research initiative at UBC, called Project Hope.

“And this is the first time in the history of this event that 100 per cent of the proceeds are going to stay right here in B.C.,” said Wendy Toyer, executive director of ALS Society of BC.

“We feel we must keep the momentum going to establishing a world-class ALS centre to create an optimal environment integrating research and clinical care.”

Cariboo-Prince George MP Todd Doherty has been the co-chair of the parliamentary ALS caucus for the past five years and said this work has opened his eyes to this devastating illness.

“Over the last couple of years, we have seen that we can move mountains when it comes to medical treatment yet here in Canada we struggle when it comes to approve treatment for those who are fighting this terrible illness,” said Doherty.

“We need to do whatever we can so that Canada can develop a rare disease strategy that we can give Canadians who are fighting these illnesses a fighting chance. I want you all to know that I am in the fight with you, and we will be doing whatever we can to raise the awareness and fight in parliament.”

Prince George-Valemount MLA Shirley Bond has also spent her career advocating for ALS research and spoke about the importance of Project Hope.

“Here is what we need: In British Columbia, we need clinical trials. There is no reason families should have to travel to Montreal or Seattle. They should be able to have clinical trials here in British Columbia and we need governments to speed up and expedite drug approval processes. They are too slow,” said Bond.

“Time is of the essence for all of you. My heart is so grateful to the families I’ve met with, the ones here and the ones across British Columbia.”

After the opening remarks, the participants were led by a piper on a walk through the park, where they returned to celebrate the rest of the afternoon with music, a barbeque, children’s activities, face painting, and a silent auction.