Vancouver/Montreal – The ALS Society of BC supports petition e-2971 to improve access to treatments for ALS. In this video, Dr Angela Genge, Director of the Clinical Research Unit at The Neuro, Montreal speaks to the need to improve access to treatments for ALS as life expectancy from diagnosis is just 2-5 years.
You can sign the petition here: https://petitions.ourcommons.ca/en/Petition/Sign/e-2971
The ALS Society of British Columbia (ALS BC) is a registered non-profit charity providing support to ALS patients, their families and caregivers to ensure the best quality of life possible for those living with and affected by ALS. The Society supports the National Research Program’s commitment to finding the cause of and a cure for Amyotrophic Lateral Sclerosis (ALS).
We believe we are at the crossroads of unprecedented hope, given that over 160 drug companies are working on ALS projects. There are promising ALS therapies in the late stages of the clinical trials. The reality, however, is that all of this activity has been largely happening outside of Canada.
The ALS Clinic at GF Strong Rehabilitation Centre is funded through Vancouver Coastal Health. The Clinic is being served by four neurologists, who provide excellent clinical care. What is missing is the opportunity for ALS patients in BC to participate in clinical trials in BC. In order to address this gap, the ALS Society fully supports:
- clinical research in BC
- clinical trials held in BC
- a Clinician/Scientist hired to champion and run the program
With a goal of $5.3 million to establish an ALS-endowed Chair at UBC, the ALS Society of BC has raised more than $3 million from an estate bequest, fundraising efforts and a $1 million grant from the BC provincial government.
The ALS Society’s Board of Directors met to develop the strategy to move this project forward. Prior to the meeting, UBC Faculty of Medicine informed the Society that the proposed project, currently entitled “ALS Centre of Excellence,” did not meet the university’s criteria for a “Centre of Excellence.” Consequently, the new title will be the ALS Society of BC PROJECT HOPE.
Two goals for Project Hope are:
- The ALS Chair will be held by a Clinician/Scientist to champion and run the program. This will be funded by an endowment investment of $5,293,750.
- The ALS Chair will strive to create an optimal environment integrating research and clinical care.
It is our belief and hope that advancing ALS research and treatment breakthroughs could benefit all Canadians living with other neurodegenerative diseases such as Parkinson’s Disease and Alzheimer’s Disease.
We invite and welcome your organization to join the ALS Society of BC PROJECT HOPE. ALS BC is committed to work with you to align with your company’s objectives, vision and values in recognition of your contribution to bring PROJECT HOPE to fruition. Donor gratitude opportunities will reflect the level of your contribution.
