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What is ALS?

WHAT IS ALS (amyotrophic lateral sclerosis)?
ALS is a neurodegenerative disease where the nerve cells that control your muscles die. The ‘living wires’ which connect your brain to your muscles degenerate, leading to a loss of mobility, loss of speech and eventually impact the ability to breathe.

This is a terminal disease. ALS does not have a cure nor an effective treatment. In Canada, approx. 2500-3000 people are living with ALS; 1000 will succumb to the disease and 1000 will be newly diagnosed each year. The lifespan after diagnosis is on average two to five years.

WHAT ARE THE TYPES OF ALS?
The most common form of ALS is called Sporadic ALS. This means, the disease can affect anyone regardless of age, gender and ethnicity. The other type of ALS is called Familial ALS. This is hereditary and affects five to ten percent of cases.

WHAT ARE THE SYMPTOMS AND SIGNS OF ALS?
Symptoms are what you experience, or feel whereas signs are what can be seen or measured. Early symptoms can be pain, feeling weak, fatigue and muscle twitching. Early signs can be tripping, dropping things, slurred or ‘thick’ speech, muscle cramping or weight loss.

WHAT HAPPENS AS ALS PROGRESSES?
As the disease progresses, you will find it more difficult to walk and move around without support or help. You will feel shortness of breath after doing very little, sometimes when lying down or reclining back; coughing when eating or drinking and have a feeling that it has ‘gone down the wrong tube’; and may have difficulty forming words and projecting your voice. Not every person with ALS will experience all symptoms or have all areas of the body affected during their life
with ALS. Although the signs and symptoms may seem to stay the same over a period of time, ALS is progressive and does not go into remission. It is terminal, usually within two to five years after diagnosis, although some people have lived with ALS for ten years or longer.

WHAT CAUSES ALS?
We don’t have a single cause for ALS, but rather this disease is recognized as having multiple interacting
causes, all sharing a common pathway leading to the destruction of nerve cells. By understanding the
mechanisms that trigger this common pathway, we will ultimately understand ALS.

WHERE IS CANADIAN ALS RESEARCH AT TODAY?
ALS research is at a time of unprecedented excitement and momentum. Many of the top researchers in the
world believe we are now positioned to find treatments that can significantly alter the course of the disease in the future.

In 1993, ALS research had a major breakthrough by discovering a gene called SOD1 that caused the disease in people affected with Familial ALS. This gene allowed us to study the disease in a new way, but it represented just one piece of a very complex puzzle. Researchers worked hard and learned a lot over the next decade until technology allowed for discovery of a second major puzzle piece, TDP-43, in 2006. Since then, we have discovered other important puzzle pieces with the most prominent being C9ORF72, in late 2011. In essence, ALS research has come further in the past five to seven years than in the previous century, and we are hopeful for a continued acceleration of our knowledge leading to an effective treatment.

Download What is ALS infographic here (French version)