Deane Gorsline on his walk to end ALS. (Deane Gorsline Facebook photo/Lakes District News)

Deane Gorsline on his walk to end ALS. (Deane Gorsline Facebook photo/Lakes District News)

Former Smithers resident loses fight to ALS

B.C. finally funds research chair for the disease at UBC

ALS has claimed yet another life, this time, a for former Smithers resident, whose family had been putting together funds for his treatment in Germany.

Patrick Joseph Caden, Pat, a former North Peace smoke jumper was diagnosed with the rare and incurable condition of ALS (Amyotrophic Lateral Sclerosis) last year at the age of 42 years. Last month on April 27, Patrick lost his battle against the disease.

The death itself is heartbreaking but what’s even more disturbing is that Caden didn’t get enough of a chance to fight his condition. With the lack of treatment and trial options in B.C. and Canada, he had to turn to a trial in Germany for which his family and friends had raised money through a fundraiser. With COVID and the travel restrictions however, he was unable to travel or get any treatment.

“Pat’s sister, Rheanna Robinson, has been a tireless advocate for her brother and for raising awareness for ALS. Her fight was been nothing short of inspirational and it breaks my heart as I think about what she and Pat’s family, especially his 12-year-old-daughter, are going through right now,” said MLA Shirley Bond who has been advocating for better treatment options for ALS and has been involved with the cause.

READ MORE: Fundraising underway for former Smithers resident diagnosed with ALS

“I wrote to the Premier and Minister of Health in March calling for more to be done. I will absolutely continue my advocacy as a Member of the Legislative Assembly of British Columbia,” she said.

BC Liberal MLA John Rustad also spoke about the lack of treatment options.

“I don’t know why Canada is so far behind in doing trials right here in Canada. Especially with COVID it was very evident that we had to rely on other countries for vaccines and we have to figure out how to do this better in Canada,” he said, adding that the BC Liberal Caucus has been meeting with ALS society and advocating for the work that needs to be done there and that he looked forward to be involved in the advocacy.

“ALS impacts thousands of Canadians and their families every year. Our province sadly lags behind others in the fight against ALS and the protection of those living with the disease. With no clinical trials currently available to ALS patients in B.C. it’s clear that so much more has to be done,” said Bond.

“That’s why I’ve been a long-time supporter of the important work of the ALS Society and, more recently, ALS Action Canada. I know the hard work that goes into raising money to help fund patient services and critical research that, hopefully, will result in a world without ALS.”

The fight for better trials and treatment options in the province and the country continues. Deane Gorsline, a former Burns Lake and Quesnel resident was diagnosed with ALS at the age of 29 and has since been fighting to bring hope to others suffering from this diagnosis.

Last year, Gorsline organized an ALS Burpee challenge and a walk to end ALS calling it “Deane’s walk to end ALS”. Gorsline is walking this year as well to raise awareness about the disease and to bring focus on the slow drug approval process and its impact on families living with the disease. Gorsline’s 2021 Walk to End ALS is currently ongoing from April 20 to June 21.

In some hopeful news for those suffering from ALS, the B.C. government is donating $3 million to add to the $2.3 million raised from private donations to establish a research professorship at the University of B.C. studying ALS.

Health Minister Adrian Dix said on Wednesday that the province initially granted a request for $1 million last year, and after the fundraising effort of the ALS Society of B.C. called Project Hope, it has added another $2 million to make the position happen.

-With files from Tom Fletcher


Priyanka Ketkar
Multimedia journalist
@PriyankaKetkar

priyanka.ketkar@ldnews.net


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