THE ADVOCATE 345
VOL. 79 PART 3 MAY 2021
At the start of 2021, I can no longer do any of these things and, as mentioned,
am losing the ability to speak.
Almost everyone with ALS experiences falls, and in 2020 I fell multiple
times—on the seawall, on the street, in my carport, in my bedroom—going
down as hard and fast as a cut tree, as I did not have the coordination or
strength to break my fall. There have been very few days during the COVID-
19 pandemic when this disease has not taken something from me physically
or beat me up mentally—often both.
And yet, despite all this, I am still here, which is not the case for many
people two years after their diagnosis. I am still very much a partner to
Adrienne, although she now carries ninety-nine per cent of the load.
And I can still be a dad to my kids (they sometimes call me “Disability
Dad” now). I can still watch soccer games (subject to COVID rules) and
after-dinner dance routines, ask how recess went and explain why we are
not getting a dog. I am still the essence of me.
HOW IT’S GOING: A TIME OF UNPRECEDENTED HOPE
These days, most of my physical and mental energy is spent on ALS advocacy.
There are two things that drive me to fight, and fight hard.
The first is that this is a time of unprecedented hope for people with ALS.
There are over 80 clinical trials underway worldwide, some very promising,
and I still have hope that I will benefit from their many advancements in
research and development of new drug therapies.
A Cambridge, Massachusetts–based company, Amylyx Pharmaceuticals,
will be applying very soon to Health Canada for the most promising
drug therapy yet, AMX0035.2 Its clinical trial was overseen, designed and
led by clinicians at the prestigious Sean M. Healey & AMG Center for ALS
at Massachusetts General Hospital.
It is the first drug therapy proven to slow down the neurodegenerative
process of ALS and is the first time a drug candidate has shown a positive
impact on both an ALS patient’s ability to function and live longer.
I am currently focusing my advocacy efforts like a laser on urging Health
Canada and the provincial governments to swiftly approve—and cover
under provincial health plans—AMX0035.3
Canada’s track record for drug approvals for ALS has been abysmally
slow, often taking two to three years after the U.S. FDA to approve a drug
for ALS. This was the case with Radicava, only the second approved drug
for ALS in Canada. It took Health Canada six months to approve it, and B.C.
almost two years more after Health Canada. People with ALS simply do not
have this kind of time to waste.