Amyotrophic lateral sclerosis (ALS) remains a bewildering disease. Although it is rare, it is not uncommon. The lifetime risk of developing the condition is roughly 1 in 300 by age 85.
The heterogeneity of the disease is also unique, said Tammy Pighin Moore, CEO of the ALS Society of Canada. “About 5% to 10% of the people diagnosed with ALS have a familial or hereditary connection to it that we can easily understand because of the genes implicated,” Moore said.
Symptoms can begin in the limb (known as ‘limb onset’) or first affect speech or swallowing (known as ‘bulbar onset’). Some patients with the disease die months after diagnosis, while others may live for decades. For example, the famed physicist Stephen Hawking lived with the condition for 55 years. The average life expectancy after diagnosis is two to five years.
Health Canada recently became the first country to approve the ALS drug Albrioza (AMX0035) from…