ALS Canadian Alliance Virtual ALS Patient/Caregiver Information Forum – 2024


First of Many Forums in 2024

🗓️ Forum Date: Thursday, March 21, 2024 📍Location: Zoom Online Forum 🕖 Pacific Time*: 10 AM – 12 PM

* 11AM – 1PM (MDT); 12PM – 2PM (CDT); 1PM – 3PM (EDT); 2PM – 4PM (ADT) and 2:30PM – 4:30PM (NDT).

You are invited to register for the ALS Canadian Alliance Patient/Caregiver Forum to be held via Zoom on Thursday, March 21, 2024. There is no fee. A Q&A session will be provided using the “chat” feature. When you register, you will be sent an invitation from Oligvy providing you with the login credentials. The Forum will be recorded and posted to your provincial societies’ website.


10:00 AM
Welcome and introduction of the ALS Canadian Alliance 

10:05 AM
ALS patient testimonial – Living my best life with ALS 
Paula Trefiak, Saskatchewan
Mike & Carmen Cels, Ontario 

10:25 AM
 Care options to manage symptoms – Dr. Andrew Eisen

10:35 AM
Overview of approved therapies for ALS:
Riluzole – Dr. Erik Pioro
Oral Suspension of  Edaravone – Dr. Colleen O’Connell
Albrioza and Tofersen – Dr. Theodore Mobach

11:15 AM
Questions and answers 

11:45 AM

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Speakers Biographies 

Paula Trefiak
An individual with ALS from Regina, Saskatchewan in Canada. She is a member of End The Legacy, a Board Member with the ALS Society of Saskatchewan, an ALS Advocate with NEALS and ALS Canada, a Community Representative with the Canadian Scientific and Medical Advisory Council (SMAC), and a member of the Advisory Committee with the International Alliance of ALS/MND Associations.

Mike & Carmen Cels
Live in Oakville, Ontario, although both have roots in Western Canada, having been born respectively in Regina and Edmonton. Mike and Carmen had successful careers in the Pharmaceutical Industry, Mike as a Senior Executive in Commercializing medicines for Canadians, and Carmen in the Human Resources and Training areas. In fact, that is how they met more than 30 years ago. They still live in the (renovated to be accessible) house they moved into when they got married, and where they raised their 2 young adult children. Both Mike and Carmen participated publicly at their respective workplaces in the 2014 Ice Bucket Challenge, and never dreamed that that 

would be the first of a lengthy journey of advocacy and fundraising, or that the cause would become even more personal. Carmen’s paternal grandmother died of ALS more than 40 years ago. Mike was diagnosed with ALS just before his 54th birthday in late 2017 and is glad to share he has recently celebrated his 60th, having lived with ALS for more than 6 ½ years. Carmen is on leave from her work and is primary caregiver to Mike. After diagnosis, the two travelled to more than 30 countries until the pandemic shut down travel.

Dr. Colleen O’Connell
A professor of Physical Medicine & Rehabilitation at Dalhousie University and a member of the Canadian ALS Research Network. She is Medical Director and Research Chief of New Brunswick’s Stan Cassidy Centre for Rehabilitation, where she is lead of the provincial ALS Clinic. Believing in strength of collaboration – or having difficulty saying no – she joins many networks and guidelines committees, including the Canadian ALS best practice recommendations and faculty of the Breaking the News in ALS education program. As Co-Chair of the World Health Organization World Rehabilitation Alliance, she collaborates with an international team to advocate for the strengthening of rehabilitation in health systems. Researcher interests are broad, tending to early adoption of technology (FOMO) in mobility and function. She has authored and provided technical guidance on rehabilitation in challenging regions, with infield emergencies humanitarian work including Haiti, Nepal and Ukraine. 

Dr. Andrew Eisen is Professor Emeritus at the University of Bri9sh Columbia (Neurology). He is a graduate of the University of Leeds in England (1959). He completed his Residency in Neurology at the Montreal Neurological Institute, McGill University and was appointed to the Staff of the Montreal Neurological Ins9tute and The University of McGill from 1968–1980. He moved to Vancouver, Bri9sh Columbia in 1980 where he developed the Neuromuscular Diseases Program and Provincial ALS Centre and Clinic. At UBC he was Associate Dean of Research (1984 – 1987), Head of Medicine (1987-1991), and Head of Neurology (1996 – 2000). Dr. Eisen has written extensively on ALS and Edited the Motor Neuron Volumes of both the Handbook of Clinical Neurophysiology (2004) and Clinical Neurology (2007). In 1999, he received the pres9gious Forbes Norris Award “For compassion and love of humanity in the study, management and support of ALS and Motor Neuron Disease.” He is a former President of the American Association of Neuromuscular and Electrodiagnosis Medicine. His publication record includes 5 books, 35 book-chapters and over 270 peer-reviewed Journal Articles. He initiated the “corticomotoneuronal (dying-forward) hypothesis of ALS” 30 years ago which subsequently led to the apprecia9on that “ALS is neurodegenerative disease of the brain”. In 2012 Dr. Eisen received a “British Columbia Community Achievement Award” for his work in the ALS-Community and is also a recipient of the Queen Elizabeth “Diamond Jubilee Medal”, awarded in recognition of his work in ALS. 

Dr. Erik P Pioro, MD, PhD
The newly appointed ALS BC Society Chair and Professor of Neurology at the UBC Department of Medicine. Dr Pioro is a clinician-scientist with expertise in neuromuscular neurology who diagnoses and cares for patients with ALS and  related disorders. His research program focuses on neuroimaging changes in patients with ALS and understanding their molecular underpinnings. He has additional interests in the genetics of ALS and the role of misfolded proteins (e.g., TDP-43) in ALS. Dr Pioro received his MD from the University of Calgary and his PhD from the University of Oxford. He completed his Neurology Residency at the MNI, McGill University with additional 

training in MRI there, and in neuropathology at the Mayo Clinic. After a neuromuscular/EMG fellowship at the Cleveland Clinic, Cleveland, OH, Dr Pioro directed the Section of ALS & Related Disorders as the Barry Winovich Endowed Chair in ALS Research at the Cleveland Clinic Lerner College of Medicine. In that role over two decades, he diagnosed and managed over 2,500 patients with ALS, was PI on several ALS clinical trials, and performed both wet lab- and imaging-based research. He has been awarded and published extensively, receiving NIH and other agency funding. Just prior to coming to UBC, Dr Pioro served as the Les Turner ALS Foundation/Herbert C Wenske Professor of Neurology, Vice-Chair of Translational Neurology, and Medical Director of 

Neuromuscular Diseases in the Department of Neurology at Northwestern University, Chicago, IL. Dr Pioro is committed to developing a ALS clinical research group at UBC that will allow patients with ALS to participate in various studies and clinical trials testing potential novel therapies.

Dr. Theodore Mobach
A neurologist, neurohospitalist and neuromuscular specialist in Calgary Alberta. He has been actively involved in the Calgary ALS clinic for 6 years and director of the ALS clinic in Calgary for 4 years. He is involved in several multicenter clinical trials for ALS therapeutics including trials involving Tofersen, a treatment he will cover more in his talk today. Dr. Mobach enjoys running with his kids in the annual ALS Betty’s walk/run each year in Calgary. 

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The ALS Canadian Alliance

The Alliance collectively strives to enhance the quality of life for all people living with and affected by ALS and support research to find the cause and cure.

We do this by:

  1. Building partnerships. 
  2. Working collaboratively.
  3. Uniting to connect Canadians living with ALS. 
  4. Advocating for people living with ALS.
  5. Building capacity.

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