Gaining momentum in making ALS a treatable not terminal disease

MARKHAM, ON, June 1, 2016 /CNW/ - In 2016, Canadians continue to demonstrate a commitment to fight the terminal disease ALS, commonly referred to as Lou Gehrig's. Over the course of the summer and fall, 93 WALKs for ALS will occur across Canada with over 10,000 participants rallying for the cause. The majority of the WALKs are happening in June in conjunction with ALS Awareness Month, in order to raise both awareness and critical funds. In 2016, our goal is to continue to build on the momentum from the Ice Bucket Challenge and renew the strong sense of community for people living with and affected by ALS.

ALS, or amyotrophic lateral sclerosis, is a terminal disease with no treatment that affects approximately two to three thousand people across Canada. It is a devastating disease. People affected with ALS typically die within 2-5 years. The motor neuron cells that connect the brain to the muscles die, causing progressive paralysis throughout the body, which affects a person's ability to eat, swallow, speak, and eventually to breathe. 90% of diagnosed cases have no known cause or hereditary link. It can affect people of any age, sex or ethnicity. The direct and indirect costs to families is between $150,000 - $250,000 over the course of the illness.

"As well as experiencing the loss of a close family member, on a daily basis I see the challenges and devastation of this disease. June as ALS Awareness Month helps to bring the reality of ALS and the need to make a difference to the forefront," - Tammy Moore, CEO, ALS Canada.

There will be many events across the country to acknowledge ALS Awareness Month. Today, MP David Tilson is making a Member's Statement in Ottawa. This year, as well as Mr. Tilson's personal loss of his father to the disease, his message will be even more poignant, as MP Mauril Bélanger was diagnosed with ALS late last year.

"I am pleased to be the National Honorary Spokesperson for the WALK for ALS, to draw attention to the ALS cause and to have the opportunity to make a difference," said Bélanger, speaking through an assistive device. "I call on everyone to join me to participate in a WALK in their community, so that support for people living with ALS is available today, and critical research is funded, providing hope for the future."

Forty percent of the proceeds from the WALK for ALS go towards investments in the ALS Canada Research Program which funds the most promising research as reviewed by a panel of international experts. In addition to funding research, the rest of the proceeds are used by the Provincial Societies Across Canada to provide assistance to people living with ALS and their families as they navigate their journey, including services that provide individual and group support, and funding or provision of equipment like mobility aids and assistive equipment such as  wheelchairs and hospital beds. These services are critical to people diagnosed with ALS and their families when facing such an insurmountable and devastating burden. To contact or donate to a Provincial Society go to www.als.ca/en/living-als/register-your-provincial-society.

Canadians can get involved in ALS Awareness Month by donating to an ALS Society across Canada, by joining walkforals.ca and continuing to raise awareness using #ALSAwarenessMonth.

About ALS Canada
The ALS Society of Canada was founded in 1977 and is the only national registered charity dedicated to ALS. ALS Canada is responsible for the ALS Canada Research Program – funding peer reviewed research grants and fostering collaboration amongst Canadian researchers, helping to nurture new ideas and build capacity. ALS Canada has a role in Ontario, similar to that of the Provincial ALS Societies, providing services and support for people living with ALS within our provinces. Together with our Provincial Partners, we support Canadians living with ALS and invest in research to make ALS treatable, not terminal.

Follow ALS Canada @ALSCanada and for more information visit als.ca.

SOURCE ALS Canada

For further information: Vanessa Blount, Director Policy and Program Development, ALS Canada, 905.248.2052 x213, [email protected]