WALKs for ALS to Build on Ice-bucket Challenge Momentum Toward Making ALS Treatable
Over the summer and fall of 2016, 93 WALKs for ALS events will be held across Canada, organized by the Markham, Ontario-based advocacy group ALS Canada, a national organization founded in 1977 which is responsible for the ALS Canada Research Program funding peer-reviewed research grants and fostering collaboration among Canadian researchers, helping to nurture new ideas. More than 10,000 participants are expected to rally for the ALS cause as Canadians continue to demonstrate their commitment to fight the terminal disease.
Most of the ALS WALKs are taking place in June in conjunction with ALS Awareness Month, with the goals of raising both awareness and funds for ALS research. For 2016, ALS Canada’s objective is to continue building on momentum from last year’s Ice Bucket Challenge, and renew the strong sense of community for people living with and affected by ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease) — a progressive neurodegenerative disorder in which motor neurons that connect the brain to muscles degenerate and die, causing loss of muscle control, the ability to eat and swallow, loss of mobility and speech, and eventually impacting the ability to breathe. There is currently no cure for ALS, or even an effective treatment. In Canada, an estimated 2,500-3,000 people are living with ALS, with approximately 1,000 succumbing to the disease and another 1,000 newly diagnosed each year.
ALS Canada notes that every day two or three Canadians die of ALS. Ninety percent of diagnosed ALS cases have no known cause or hereditary link, and the disease can affect any age, sex or ethnicity with the direct and indirect costs to families ranging between $150,000 to $250,000 over the course of the illness.
The WALK for ALS is Canada’s largest volunteer-led fundraiser for ALS, and is about local communities coming together to raise funds and celebrate hope for a future without ALS. Funds received support assistance for Canadians living with ALS and are invested in research to make ALS a treatable, rather than a terminal disease.
Many events will be held across Canada to acknowledge ALS Awareness Month. On June 1, opposition Conservative Party Member of Parliament David Tilson, as he has in years past, kicked the month off with a Member’s Statement in Ottawa. This year, as well as Tilson’s personal loss of his father to the disease, his message was made even more poignant with Liberal Party MP Mauril Bélanger’s having been diagnosed with ALS late last year.
Eight months ago, Mauril Bélanger was running in Canada’s 2015 federal election, continuing his 20-plus years of serving constituents in the Parliamentary riding of Ottawa-Vanier, which he has represented since 1995. Bélanger’s life changed profoundly in November 2015, just a month after the election, when he was diagnosed with ALS. Although the disease has taken away his ability to speak, it has not taken away his voice or commitment to help others, and Bélanger is refocusing his energy, partnering with the ALS Societies across Canada and taking on the role as 2016 National Honorary Spokesperson for the WALK for ALS.
“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 in an ALS Canada release. “I call on everyone to join me and 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.”
With a goal of raising $4 million, the WALK for ALS will be held in 93 communities across Canada. Sixty percent of proceeds are retained by the ALS Society in each of Canada’s 10 provinces and used 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.
Forty percent of WALK for ALS proceeds will be allocated to funding the ALS Canada Research Program, with investment in peer-reviewed competitions, and supporting the most promising ALS research in Canada.
“The ALS Societies fulfill a critical role when a person is faced with the realities of a diagnosis of ALS, which impacts the entire family,” explains Catherine Bélanger, wife of Mr. Bélanger. “It means a lot to our family to be able to help the ALS community through our support for the WALK for ALS.”
“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,” says Tammy Moore, CEO, ALS Canada. “We are grateful to have the Bélanger family work alongside us and to have Mr. Bélanger be the National Honorary Spokesperson for the WALK for ALS. This nationwide program provides vital funds to allow the ALS Societies in each province across Canada to carry out their work assisting people living with ALS and continues our commitment to investment in the most progressive and promising research to make ALS a treatable disease.”
Canadians can get involved in ALS Awareness Month by donating to an ALS Society across Canada, by joining WALK for ALS and continuing to raise awareness using #ALSAwarenessMonth.
Each of Canada’s 10 provinces has an ALS Society which serves people living with ALS, their families, and caregivers through provision of information, referrals and support for people affected by ALS. In some provinces, the society may also offer equipment to assist people on their journey with ALS. For people living with ALS in Ontario, ALS Canada carries this responsibility.
For more information about WALK for ALS, or to contact or donate to a provincial ALS Society, visit htwww.als.ca/en/living-als/register-your-provincial-society or http://www.als.ca