PROJECT HOPE | ALS Society of BC

Global BC - PROJECT HOPE 2024 PSA

PROJECT HOPE is an urgent and innovative initiative aimed at finding a cure for ALS, also known as Lou Gehrig’s disease. Dr. Erik Pioro, a renowned professor in ALS Research at UBC, is assembling a world-class ALS Clinical Care and Research Team that will stand as the cornerstone of PROJECT HOPE, inviting patients to participate in groundbreaking clinical trials and research projects aimed at finding a cure for ALS.

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Dr. Erik P. Pioro will lead PROJECT HOPE for ALS Society of BC

Photo L-R: Jan Bruce with Dr. Erik Pioro.

Press Release

April 15, 2021 the $5.3Million goal was achieved.

Photo L-R: Wendy Toyer, Executive Director ALS Society of BC with Brad MacKenzie, ALS Society of BC Director, and Chair of the Advocacy Committee.

June 2020 Press Conference to announce the $5.3Million campaign to establish the ALS Society of BC ALS Research Professorship at UBC.

Photo L-R: Virtually Honourable Adrian Dix, Minister of Health, Dr. Jon Stossel, Head of Neurology UBC and Donna Bartel, ALS Society of BC President.

The ALS Society of British Columbia and PROJECT HOPE

The ALS Society of British Columbia (ALS BC) is a registered non-profit charity supporting ALS patients, their families, and caregivers to ensure the best quality of life possible for those living with and affected by ALS.

The ALS BC community, including donors and patients, firmly believes that we are standing on the threshold of unprecedented hope. With many ALS therapies showing great promise in late-stage clinical trials and the UBC Faculty of Medicine ready to accelerate translational research, now is the time to invest in building research capacity for ALS right here in British Columbia.

PROJECT HOPE is the unwavering commitment of ALS BC to support research with the ultimate goal of discovering the cause of and cure for Amyotrophic Lateral Sclerosis (ALS).

How will PROJECT HOPE help find the cause of and a cure for Amyotrophic Lateral Sclerosis (ALS)?

ALS BC, in partnership with the Province of BC, has made a significant contribution of $5.3M to establish a perpetuity-endowed trust to fund the ALS Society of BC Professorship in ALS Research at UBC. Furthermore, the society has pledged an additional $1.5M over a period of ten years to support the Professorship.

Our aim with the Professorship is to establish an ideal setting that merges research and clinical care. Our objective is to enhance clinical care by promoting advanced ALS research and treatment innovations at UBC. To achieve this, ALS BC has committed to donating an additional $20M to UBC to support this ambitious goal. We hope that this commitment will benefit all Canadians who are affected by ALS, as well as those who have other neurodegenerative diseases like Parkinson’s and Alzheimer’s.

Dr. Erik P. Pioro, MD, Ph.D., FRCPC, FAAN, an experienced senior clinician-scientist focusing on ALS, has been appointed to play a crucial role in advancing innovative treatment options for patients in British Columbia. His expertise and guidance will help establish the province as a leading center for ALS research nationally and internationally. Dr. Pioro’s work will ensure that patients in British Columbia have access to the latest clinical trials and enhanced care.

PROJECT HOPE: A Beacon of Light in the Fight Against ALS

Under the leadership of neurologist and ALS researcher, Dr. Erik Pioro, PROJECT HOPE emerges in 2024 as a pioneering initiative with a bold and visionary agenda for the next 3-5 years. Our mission is to ignite a beacon of hope for everyone touched by Amyotrophic Lateral Sclerosis (ALS)—from patients and their families to caregivers, clinicians, specialists, researchers, and beyond. At the heart of our efforts are the individuals bravely facing ALS, to whom we dedicate our unwavering commitment to make a significant difference.

As you engage with PROJECT HOPE, you will find our Clinical Care Team ready to provide comprehensive support tailored to your needs. Based at the Djavad Mowafaghian Centre for Brain Health (DMCBH) on the University of British Columbia campus, we offer a sanctuary for those able to visit. For our distant community members, our innovative telemedicine services and mobile clinics ensure you receive our care, regardless of your location—even extending our reach to the Yukon.

Dr. Pioro is at the forefront of assembling a world-class ALS Clinical Care Team, bringing together specialist staff including occupational therapists, physical therapists, speech therapists, nutritionists, social workers, and nurses. Our future plans include expanding our team to include respiratory therapists and neuropsychologists, alongside a dedicated research nurse or nurse practitioner who will bridge clinical trial research with patient care.

The ALS Clinical Research Team stands as a cornerstone of PROJECT HOPE, inviting patients to partake in groundbreaking clinical trials and research endeavors aimed at finding a cure for ALS. This team will be instrumental in advancing our understanding of ALS through the collection of crucial clinical data and biological samples for our comprehensive ALS database and biorepository.

Our commitment extends into the realm of basic research, where we are poised to expand our laboratory-based ALS research efforts. By translating bench discoveries into promising novel therapies, we aim to identify biomarkers critical for understanding disease causation, progression, and response to experimental therapies. Collaborations with neuroimaging experts and fellow UBC researchers will enhance our capability to monitor the disease’s impact and explore new avenues for treatment. Housing these dedicated teams within the UBC DMCBH represents a critical step forward in our collective quest to eradicate ALS.

PROJECT HOPE is more than a project; it’s a movement towards understanding, treating, and ultimately defeating ALS. We pledge to keep the community informed through annual reports, highlighting our progress and evolving strategies based on our continuous learning.

We invite you to join us in this ambitious journey, fueled by hope and driven by science, as we strive to turn the tide against ALS. Your interest, support, and engagement are crucial to our success. Together, we can make a difference in the lives of those affected by this devastating disease.

“The partnership between the ALS Society and UBC is an historic leap toward meaningful change for all those living with ALS here in BC and beyond,” said Dr. Jon Stoessl, professor and head of UBC’s department of neurology. “Patients are counting on us to improve access to treatment, develop new therapies and move closer to a cure for ALS. Local patient participation in clinical trials will be critical to achieving these bold aims.”

Update on als clinical trials

“In 1999, when I was still Director of the ALS Clinic at the Vancouver General Hospital we were honored to host the Annual ALS Symposium organized through the International Alliance of ALS/MND Associations, which represents about 60 nations. During the meeting I chaired special 2-hour question/answer session, for ALS patients and their families. About a dozen world-wide ALS physician-scientists participated. The session was designed to push the "hope meter" up by several notches. It is my firm belief that PROJECT HOPE will push the meter's dial into overdrive. It is true that meaningful ALS therapy has been elusive, as has been true for Parkinson's and Alzheimer's diseases, the other major neurodegenerations. But we are on the verge of a major game change. 21st century understanding of the mechanisms of neuronal cell death in neurodegenerations has opened windows to a spectrum of therapeutic options. Combination therapy is likely to prove most efficacious. Also, and equally important is the search for early markers of disease. Because ALS begins many years and probably decades before it becomes clinically apparent, early pre-clinical detection will allow for rescue of sick cells that are not dead, and thereby prevent motor deficits that are characteristic of ALS. PROJECT HOPE is ambitious, and its fruition will require major funding. I am delighted and deeply enthusiastic to be part of this unique venture that has created a "marriage" between a disease-oriented society (ALSBC) and a major university (UBC), in addition to the support of the Provincial Government”

Andrew Eisen

ALS Physician Scientist and Founder of the ALS Society of British Columbia.

“Thanks to the generosity of so many donors, with over $5 million raised, PROJECT HOPE is launched. Those funds go to the research that give us hope. With more promising lines of investigation being pursued than ever before, there is reason for hope.”

MP Elizabeth May

Member of Parliament - Saanich—Gulf Islands, British Columbia

“The BC Liberals have sent a formal letter to Premier Horgan urge his government to continue providing support to the ALS Society of BC's transition into the second phase of Project Hope, which will enable clinical trials and further research into Amyotrophic Lateral Sclerosis (ALS) here in British Columbia. "We all want a world without ALS, and the only way to get there is through investment in research and clinical trials like those that will be possible if Project Hope comes to fruition.”

BC Liberal Caucus

“Today we have some hope, with the direction of the ALS Society to raise funds and in cooperation with the government we can dream of an optimum environment for ALS research and clinical care in BC. To make this dream a reality we are working with the ALS Society of BC and creating a fundraiser with 100% of funds going directly to PROJECT HOPE. This will provide a hopeful outlook for BC residents that are diagnosed with ALS.”