2021 News Archive

December 29th, 2021

Amylyx Pharmaceuticals, Inc. today announced that the (FDA) has accepted for review its New Drug Application (NDA) for AMX0035 and taurursodiol for the treatment of amyotrophic lateral sclerosis (ALS). The FDA has granted Priority Review and assigned a Prescription Drug User Fee Act date for AMX0035 of June 29, 2022, the target date by which the FDA intends to complete its review and take action on the NDA. Click here for the latest press release.

November 1st, 2021

Amylyx Pharmaceuticals, Inc., a pharmaceutical company focused on developing new treatments for amyotrophic lateral sclerosis (ALS), Alzheimer’s Disease and other neurodegenerative diseases, announced today they have submitted a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for AMX0035 for the treatment of Amyotrophic Lateral Sclerosis (ALS). If you’d like to learn more about the NDA submission, click here for latest press release.

June 14th, 2021

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 it has submitted a New Drug Submission (NDS) to Health Canada for AMX0035 (sodium phenylbutyrate (PB)-taurursodiol (TURSO)) for the treatment of ALS.

To read the article, click here.

June 2nd, 2021

To help mark the beginning of #ALSAwarenessMonth, our province’s MLA’s and MP’s have lent their voice to help raise awareness for this devastating disease and to emphasize the importance of ALS research in BC. We thank them for standing with us for #aFutureWithoutALS

May 17th, 2021

June is ALS Awareness Month! 

JUNE is ALS Awareness Month - updated May 25 Amyotrophic Lateral Sclerosis (ALS) Awareness Month - June 2021.pdf PROCLAMATION

May 12th, 2021

May 12 2021 Province of BC Announcement

May 11th, 2021

Timely Access to Proven ALS Therapies

Earlier this year, the company Amylyx announced plans to apply to Health Canada in the first half of 2021 for its AMX0035 therapy. While this announcement does not yet mean the drug is available in Canada, Amylyx’s decision to pursue regulatory approval and a special access program is a promising milestone for the Canadian ALS community.

In a 24-week Phase 2 clinical trial, AMX0035 was shown to be safe and to slow the rate of decline in people living with ALS on the therapy compared to those on placebo. The preliminary data also showed potential benefits in areas including measures of muscle strength, breathing and hospitalization frequency.

The ALS Societies across Canada are advocating for more timely, equitable and affordable access to proven ALS therapies.

April 19, 2021

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  ALS Research  and is committed to finding the cause of, and a cure for Amyotrophic Lateral Sclerosis (ALS).

We believe we are at the crossroads of unprecedented hope.  There are over eighty (80) promising ALS therapies in the late stages of the clinical trials. Tragically the reality is all of this activity has been largely happening outside of Canada. None in BC.  British Columbians diagnosed with ALS must travel, at their own expense, to other provinces and countries to participate in ALS clinical trials.  That is their only hope.

For British Columbians with ALS, there are no proven effective treatments and no access to promising clinical trials. We must provide access to clinical trials in BC to provide hope to British Columbians living with ALS.  Time is of the essence!

We are extremely grateful for the generous support of PROJECT HOPE and are pleased to announce the $5.3 Million goal has been achieved!

Two goals for PROJECT HOPE are:

  1. To establish an ALS Research Professorship at UBC which 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.  This endowed position will exist in perpetuity.
  2. The ALS Professorship will strive to create an optimal environment integrating research and clinical care.

Next Steps:

  1. Gift and Trust agreements between the ALS Society of BC and University of BC Faculty of Medicine to create an ALS Research Professorship
  2. Recruit ALS dedicated Clinician/Scientist
  3. Continued support

CLICK HERE TO VIEW A LIST OF ALL OF OUR DONORS

April 8, 2021

ALS Society of British Columbia elects new Board at the 40th Annual General Meeting.

Executive:

Sheldon Cleaves, President

Elizabeth Legge, Vice President

Donna Bartel, Immediate Past President

Norm Louie, Treasurer

Louise Adderley, Secretary

 

Directors:

Dr Elizabeth Bannerman

Jas Baweja

Bob Bryant

Jeff Derby

Dr Andrew Eisen

Linda Fontana

Ian Hayward

Brad MacKenzie

Ellen Mahoney

Erin Sowerby Greene

Dave Walman

George (Jim) Williams

Honourary Life Directors:

Dr Andrew Eisen

Dr Charles Krieger

Chapters:

ALS Society of BC – North Central Island Chapter

Gianpierro Denomme, President and Mid Island Walk to End ALS Coordinator

Shirley Theriault, Secretary and Support Group Facilitator

Murray Chandler and Christina Brown, Directors at Large

Erin Sowerby Greene, Mid Island Walk to End ALS

ALS Society of BC – Victoria Chapter

Gillian Calder, President

Ellen Mahoney, Director at Large and Support Group Facilitator

Hailey Parker, Victoria Walk to End ALS Coordinator

Retiring from the Board after 6 years of service was Erin Barrett.

April 7, 2021

ALS Society of BC Awards Celebration 2021: 

April 1, 2021

FC | Edaravone update – Personal Importation

Health Canada confirms personal importation for edaravone will remain open beyond April 1, 2021 until October 1, 2021.  Our understanding is that the Canada Border Services Agency (CBSA) has been contacted and informed that the drug will remain on the list to be allowed in. 

For more information,

Health Canada  [email protected]

March 22, 2021

Culinary Care in ALS – Nutritional Toolkit:

http://sla-quebec.ca/wp-content/uploads/2021/03/ALS_Toolkit_Eng_Page_LR.pdf

February 8, 2021

Notice of Annual General Meeting of Members Scheduled for April 6, 2021 

For more information click here!

Registration is mandatory.   Please RSVP to Rena Mendoza [email protected] or call (604) – 278-2257 Ext 225 before March 21st, 2021. The Zoom Meeting invitation will be sent to all registered Members.