MAY 25, 2021
RICHMOND, BC (PGA of British Columbia) – The PGA of BC Golfathon for ALS presented by Pacific Blue Cross tees off next week for a 16th consecutive year on the heels of exciting news for patients and families affected by the neurodegenerative disease.
Encouraging developments on local treatment options have only underscored the importance of the Golfathon for ALS that takes place each June, when PGA of BC Professionals across the province play from sunrise to sunset, completing as many holes as possible in a single day at their respective courses to raise money in support of the ALS Society of BC (ALSBC). The initiative set a new record in 2020 with more than $200,000 raised, bringing the cumulative total since 2006 beyond the $2.1-million mark.
Earlier this month, ALSBC’s PROJECT HOPE reached its funding goal of $5.3 million to establish an ALS Research Professorship at the University of British Columbia, which will exist in perpetuity and strive to provide BC residents diagnosed with ALS with greater access to promising therapies in the late stages of clinical trials.
Though dozens of those therapies exist worldwide, none have been available close to home, meaning British Columbians with ALS have needed to pay out of pocket to travel to other provinces or countries to access them.
“Just before the pandemic struck, the ALS Society of BC was made aware that ALS clinical trials were not being held in BC due to a lack of capacity to do so, or staff in place to run the trials,” said Wendy Toyer, ALSBC Executive Director. “This was not acceptable, as we believe we are at the crossroads of unprecedented hope.”
While ALSBC has raised millions to help make PROJECT HOPE a reality, the BC government recently announced a $2-million commitment that brought the initiative to its fundraising finish line. Going forward, an ALS-dedicated clinician/scientist will be based at the Djavad Mowafaghian Centre for Brain Health at UBC, where research is already ongoing on other neurodegenerative diseases.
“Now that PROJECT HOPE is successful, British Columbians living with ALS – myself included – should feel proud that we will soon have more local access to cutting-edge, world-class clinical trials for the disease,” Brad MacKenzie, chair of ALSBC’s Advocacy Committee, said in a release.
Although the significant totals raised over the years through the Golfathon for ALS were not part of the $5.3 million making PROJECT HOPE a reality, PGA of BC members and those donating to the cause have still played an important role in making it achievable.
“This would not have been possible without the support of the PGA of BC Golfathon for ALS,” said Toyer. “The support received through the Golfathon gave the ALS Society of BC confidence that we could succeed without compromising patient and family service programs provided to enhance the quality of life while living with ALS.”
“Words are not adequate to express our deep gratitude for the outstanding support of PGA of BC Professionals. From the bottom of my heart, and on behalf of people living with ALS, their families and caregivers, thank you.”
Even with this exciting news, PGA of BC members know there’s still much work to be done to help the hundreds of ALS patients throughout the province. No known cause or cure exist for the fatal disease, which typically immobilizes a person within two to five years of their initial diagnosis. Support equipment costs an average of $140,000 per patient, while nursing and home-care fees can reach 10 times that amount. Donations made to the Golfathon for ALS help ensure that ALSBC can continue providing its programs and services to patients at no cost.
That’s why Golf Professionals lend their muscles in honour of those who have lost the use of their own due to ALS each June through the Golfathon, with most participating PGA of BC members returning year after year to support the tremendous cause.
“The harsh reality is that ALS does not stop, and neither can we,” said PGA of BC Executive Director Donald Miyazaki. “ALS robs people of so much, especially time.”
Golfathons for ALS will be taking place at more than 30 PGA of BC-affiliated facilities throughout June, which is also ALS Awareness Month in British Columbia. Anyone is welcome to donate in support of PGA of BC Professionals participating in a Golfathon for ALS as the Association looks to surpass last year’s record total.
Visit www.golfathonforals.com to learn more about the cause, to view a list of participating facilities and Professionals or to make a donation.
---
For more information, please contact:
Eric MacKenzie
Communications & Marketing Manager, PGA of BC
(604) 303-6766
eric@pgabc.org
Wendy Toyer
Executive Director, ALS Society of BC
w.toyer@alsbc.ca
O: 1-800-708-3228 ext. 222
C: 778-999-6257