ALS and Related Disorders Clinic Opens at UBC!

FOR IMMEDIATE RELEASE
June 18, 2024

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Richmond, British Columbia – The ALS Society of British Columbia’s (ALS BC) PROJECT HOPE, in a powerful collaboration with the Government of British Columbia, the Faculty of Medicine at the University of British Columbia, and Vancouver Coastal Health, proudly announces the opening of the new Amyotrophic Lateral Sclerosis and Related Disorders (ALSRD) Clinic.

This state-of-the-art facility, strategically located at the University of British Columbia’s (UBC) Djavad Mowafaghian Centre for Brain Health, is a beacon of hope for ALS patients, their families, and caregivers. It promises a brighter future through comprehensive support and tailored care for individuals with ALS and related motor neuron diseases, including assessment, intervention, and consultation services.

Under the leadership of Dr. Erik Pioro, MD, Ph.D., FRCPC, FAAN, a distinguished neurologist and ALS researcher recently appointed to the Professorship in ALS Research at UBC, the clinic features a multidisciplinary team of specialists, including neurologists, nurses, therapists, pathologists, dieticians, and social workers. This initiative, a significant milestone in the Society’s journey, is set to transform the quality of life for ALS patients by offering cutting-edge clinical care and extending services to underserved regions across British Columbia through innovative telemedicine services and mobile clinics to ensure patients receive care, regardless of their location, instilling a sense of hope and optimism in the hearts of those affected.

The first patient was seen at the new facility on Wednesday June 5th when the Allied Health Care Team (AHCT) conducted a follow-up appointment with a patient living with ALS. The first newly-diagnosed patient was seen at the new facility on Tuesday June 11th by Dr. Nadim Jiwa.

“The move affirms the commitment of ALS BC and PROJECT HOPE to putting UBC on the map in Canada and internationally as a Centre of Excellence for ALS Clinical Care and Research so people living with ALS and related disorders in BC can have the opportunity to participate in local therapeutic clinical trials and research studies.” said Dr. Erik Pioro.

ALS BC was founded in 1981 by Dr. Andrew Eisen. The ALS Clinic opened shortly after at Vancouver General Hospital (VGH), making it amongst one of the first clinics dedicated specifically to treating ALS patients in North America. The clinic remained at VGH until June of 2005, when it relocated to the GF Strong Rehabilitation Centre for the past two decades.

The ALSRD Clinical Research Team, a key part of PROJECTHOPE, will invite patients to participate in cutting-edge clinical trials and research initiatives. These initiatives are at the forefront of the search fora cure for ALS, and the team’s work is instrumental in expanding knowledge of the disease. Dr. Pioro is working tirelessly to establish an exceptional ALSRD Clinical Research Team, and progress is well underway, with the hope that it will become operational soon.

In 2019, the ALS Society of BC established PROJECT HOPE, raising over $5.3 million to create an endowed trust dedicated to ALS research. The initiative was made possible through generous contributions from the Province of BC, UBC, and individual and corporate donors, who have been instrumental in the Society’s achievements and signified a promising future for ALS research and care in our Province. Dr. Pioro was appointed in August 2023 to lead this pioneering initiative, signifying a monumental advancement in ALS research and care in British Columbia.

Operating a multidisciplinary ALSRD Clinic for 250 patients annually is a significant financial undertaking, costing approximately $1,662,500. Additionally, a single clinical trial for 40 patients averages$1,460,000. With over 400 people living with ALS in British Columbia, the annual cost could exceed $2,660,000. This underscores the urgent need for financial support to ensure the continued operation of the clinic and the advancement of ALS research.

“PROJECT HOPE immediately provides me with the funds needed to begin assembling the various ALS teams that will comprise our developing world-class ALS program at UBC: Clinical Care, Clinical and Translational Research, Neuroimaging Research, and Basic Research Teams. We look forward to collaborating with our clinicians and researchers working on other neurodegenerative diseases, including Alzheimer’s, frontotemporal dementia, and Parkinson’s since we will now all be located at the Djavad Mowafaghian Centre for Brain Health at UBC.” Dr. Pioro adds.

Reflecting on the 10th anniversary of the Ice Bucket Challenge, we’re inspired by the global unity it created. Global ALS Awareness Day is designated by the International Alliance of ALS/MND Associations, of which the ALS Society of BC is proudly a member. It is commemorated annually on June 21st. This date was chosen due to its significance as a solstice and symbolizes the hope for a turning point in the fight against ALS/MND. On this day, the international community unites to promote awareness and raise funds for research, caregiving, support, and assistive technology for individuals impacted by ALS/MND. The community uses the hashtag #ALSMNDWithoutBorders to unite and spread awareness on this significant day.

The ALS Society of BC sincerely appreciates the Province of BC and the legislature members for their generous backing and substantial $3 million financial allocation to help establish the ALS Society of BC Professorship in ALS Research at UBC. This initial financial support from the BC government has played a vital role in the ALS Society of BC’s PROJECT HOPE initiative. It has helped ensure that the newly opened Amyotrophic Lateral Sclerosis and Related Disorders (ALSRD) Clinic at UBC is outfitted with state-of-the-art facilities and staffed by a world-class clinical care and research team. The ALS Society of BC is committed to raising an additional $20 million. Continued support and funding are essential to fortify pioneering research endeavours aimed at discovering a cure for ALS, elevate patient care and support services, and sponsor community outreach and educational programs. By supplementing other funding streams, ongoing governmental financial support will guarantee the long-term sustainability and maximal impact of PROJECT HOPE in the battle against ALS.

PROJECT HOPE is more than just a project; it’s a movement aimed at understanding, treating, and ultimately defeating ALS. Our current trajectory will make the Province of BC one of the leading Canadian locations for the research. Finding a cure for Amyotrophic Lateral Sclerosis (ALS) is an ambitious undertaking. However, with ongoing support, PROJECT HOPE can have a real impact. Donations are directly allocated to cutting-edge research, clinical care, and trials.

Sincerely,

Donald Miyazaki, Executive Director of the ALS Society of British Columbia