2020 News Archive
December 3, 2020
Interior Health has launched a new 1-800 number that will provide a single point of access for Central Okanagan residents to connect to community-based health-care services.
November 23, 2020
NEW Virtual Caregivers Support Group:
The group provide an open, friendly and safe environment for caregivers to discuss issues related to ALS, self-care and stress management
Meetings held on the 3rd Thursday of the month from 10:30AM-12:30PM
Support Group Facilitator – Louise Adderley E | [email protected]
Contact Alexandra at [email protected] to register on ZOOM
October 21, 2020
We are closer than ever before to seeing treatments that could make a difference for people living with ALS. However, Canadians’ ability to access tomorrow’s proven ALS therapies may be at risk.
Federal reforms slated for January 1, 2021 will change how drugs are priced in Canada and there could be dire implications for Canadians living with ALS. Will you join us and express your concerns to your elected official?
Please visit https://www.als.ca/advocacy/PMPRB?sp_ref=678530463.392.207454.e.0.2 to learn more and participate.
Thank you,
Wendy Toyer, Executive Director
ALS Society of BC
October 9, 2020
Happy Thanksgiving!
In the midst of all that’s happening around the world right now, we still have so much to be grateful for. Thanks to your generosity and support, our programs, services, and fundraising events have continued to make an impact in the lives of people living with ALS.
To watch a short impact report video, click here.
October 6, 2020
In the recent edition of Macleans magazine, the ALS Society of BC was ranked in the Top 100 of Canada’s Best Charities. To identify Canada’s best charities, Macleans starts with a list of more than 700 analyzed by Charity Intelligence. The Canadian research organization produces standardized financial reports on all of Canada’s major charities, as well as smaller ones across the country. (Methodology)
With a final grade of 90% the ALS Society of BC ranked #76.
September 17, 2020
The ALS Society of BC held the 39th Annual General Meeting yesterday in a virtual format due to the world wide pandemic. The 2019 audited financial statement and June 30, 2020 interim financial statement were approved. KPMG Burnaby was named as the 2020 auditors. Read more…
September 3, 2020 – Amylyx Pharmaceuticals Announcement
CAMBRIDGE, Mass.–(BUSINESS WIRE)–Amylyx Pharmaceuticals, Inc., a pharmaceutical company focused on developing new treatments for amyotrophic lateral sclerosis (ALS), Alzheimer’s disease and other neurodegenerative diseases, today announced the publication of results from the pivotal CENTAUR trial evaluating AMX0035 – an investigational neuroprotective therapy designed to reduce the death and dysfunction of motor neurons – in people with ALS in the New England Journal of Medicine (NEJM).
Click HERE to read the full document
August 19, 2020 – The Province of BC approves RADICAVA
The Province of BC approves RADICAVA (Endaravone) as treatment for ALS
Announced today that the Government of British Columbia (BC) has added RADICAVA® (edaravone), a treatment for amyotrophic lateral sclerosis (ALS), to the BC PharmaCare Formulary (special authorization). The listing will be effective on August 19, 2020.
“We are encouraged by the Government of British Columbia’s support and commitment to the ALS community. This is an important milestone in our efforts to secure coverage under publicly funded provincial, territorial and federal drug plans. In addition to British Columbia, Quebec, Ontario, Alberta, New Brunswick, Manitoba, Saskatchewan and Nova Scotia have listed RADICAVA on their public drug plans. It is a critical time to ensure access to medications. For patients enrolled in the MTP Patient SupportTM program, we are committed to providing safe and consistent infusion services;” Andy Zylak Country Manager, Canada, MTP-CA.
“Endaravone (RADICAVA) is the first medication approved in Canada for ALS patients in over 20 years. People living with ALS are desperate for new innovations. These medications must be available to them. We are extremely grateful to the Province of BC for their support. As we move forward with clinical trials, this support will be essential;” Wendy Toyer Executive Director ALS Society of BC.
Click HERE to read more information from B.C. Health Minister Adrian Dix.
August 18, 2020 – Fly Away Raffle
Congratulations to our Fly Away raffle winner for the WestJet voucher for two and a $500 visa gift card
Christine Conway, Sechelt, BC,
Congratulations to our second place winner for the Vitamix Blender
Joseph Krajnyak, Chilliwack, BC
Thank you everyone for participating in our annual WestJet raffle.
August 10, 2020 – Notice of Annual General Meeting
Due to COVID-19 pandemic, the ALS Society of BC will hold the Annual General Meeting on Wednesday, September 16, 2020 via Zoom at 10:00 AM to ensure safety for all.
2019 Annual Report and Financial Statements
January to June 2020 Interim Income Statements
2020 Proposed Directors and Biographies
May 21, 2020 – Cycle of Hope Lemon“aid” Continuing Education Fund
The ALS Society of BC is pleased to announce the recipients of the Cycle of Hope Lemon“aid” Education Fund.
The fund was created in 2015 with a $12,500 donation from the Cycle of Hope Society to seed the Cycle of Hope Lemon“aid” Continuing Education Fund. Recognizing that ALS affects an entire family emotionally and financially, this fund was created to provide financial “aid” to B.C. students whose parent is living with or has passed away from ALS.
The 2020 recipients of a $2,000 grant are Marlee Wilson from Burns Lake and Colton Meaden from Maple Ridge.
May 19, 2020 – June is ALS Awareness Month
The month of June 2020 has been proclaimed by the Province as ALS Awareness Month in BC. On June 1st and 2nd, BC landmark buildings will light up in the ALS colour purple to show support for people living with ALS.
Click here to see the list of BC Landmarks supporting ALS Awareness Month
Other events taking place in support of ALS:
- Virtual Walk to End ALS – the Walk is the largest fundraiser held each year to support people living with ALS in BC & the Yukon and the Canadian ALS Research Program. Join us on Saturday, June 20, 2020, the day before Global ALS Awareness Day. Visit walktoendals.ca for more details.
- PGA of BC Golfathon for ALS – During the month of June, PGA of BC golf professionals will golf from sunrise to sunset, in support of people living with ALS in BC. For every dollar donated, the ALS Society of BC is entered into a draw to win $20,000 through the Great Canadian Giving Challenge! For more information, visit golfathonforals.com
ALS does not stop and neither can we. The need for your support is more vital and urgent than ever. We hope you will help if you are able.
April 23, 2020 – pCPA Negotiations Update from MTP-CA
Hello ALS Community:
On behalf of Mitsubishi Tanabe Pharma Canada (MTP-CA), I am pleased to share that we have entered into a Letter of Intent with the pan-Canadian Pharmaceutical Alliance (pCPA) for RADICAVA® (edaravone). This is an important milestone in our efforts to secure coverage under publicly funded provincial, territorial and federal drug plans.
As you know, the next step toward securing coverage under publicly funded drug plans is to conclude product listing agreements with the provinces and territories. I will continue to provide updates as these jurisdictions reach their decisions.
In addition, MTP-CA will continue providing RADICAVA free of charge to patients who participated in the MTPC Edaravone Supply Program (SAP). This extension will be for an additional six months, or until reimbursement is available, whichever occurs earlier.
It is a critical time to ensure access to medications. ALS patients, like many other vulnerable patient populations, may face significant health challenges in the context of the COVID-19 pandemic. We want you to know that we are committed to providing safe and reliable infusion services for patients enrolled in the MTP Patient SupportTM program, as well as an uninterrupted, ongoing supply of RADICAVA.
I look forward to continuing to work together in support of the ALS community across Canada.
Sincerely,
Andy Zylak
Country Manager, Canada, MTP-CA
Mitsubishi Tanabe Pharma Canada, Inc.
March 26, 2020 – Update on Service provided by the ALS Society of BC
Hello,
The ALS Society of BC is open however staff, with the exception of myself, are working from their homes. They can be reached by email Click here for email addresses.
Equipment Loan Program
I received confirmation that our equipment loan program supplier, HME Mobility & Accessibility have been designated as an essential service so this program is not in jeopardy.
Provincial Respiratory Outreach Program (PROP)
I was informed people living with ALS continue to be a priority with PROP.
Communication Assistance for Youth & Adults (CAYA)
I was informed people living with ALS continue to be a priority with CAYA.
ALS Centre at GF Strong
GF Strong is closed due to the pandemic, however the physicians are consulting with patients by phone, email and Zoom. The allied health care professionals are working remotely. During this time if you require support please contact Manisha Motha, Social Worker at [email protected]
The safety of people living with ALS, their families and caregivers is our top priority always. We will get through this together. Please take good care.
Warm regards,
Wendy Toyer, Executive Director
March 18, 2020 – COVID-19 Guidance for the ALS Community
People living with ALS often have a harder time with breathing and lung function. This information sheet has been created by ALS clinicians across Canada to help you know what to do during this phase of the COVID-19 pandemic.
March 16, 2020 – Message to ALS Members and Clients
COVID-19 Virus Pandemic
The safety of people living with ALS, their families and caregivers is our top priority during these uncertain times. In light of the situation caused by the COVID 19 virus emergency, the ALS Society of BC elects to err on the side of caution.
Click here to read the full message
March 11, 2020 – Message to ALS BC Living with Support Group Facilitators and all patients
A special meeting of the ALS Society of BC executive committee and Dr. Neil Cashman, Academic Director & Dr. Hannah Briemberg, Director of Medicine ALS Centre at GF Strong was held to develop a plan, in light of the ongoing COVID-19 Virus crisis.
It was an unanimous decision to suspend all ALS BC Living with ALS Support Groups until it is safe to gather again.
The March 31st Surrey Group is scheduled to be a Virtual Interactive event with Dr. David Taylor answering questions on ALS Research. The in-person session at KPU will be cancelled , however the session will be available online. Contact [email protected] for details.
You will be contacted when the Living with ALS Support Groups are reinstated.
The ALS Society of BC chooses to err on the side of caution to ensure the safety of all. Thank you for your understanding.