Montreal, July 31, 2015 – A year after the spectacularly popular Ice Bucket Challenge, the world-wide ALS community is reviving the fundraiser in order to raise much needed funds for amyotrophic lateral sclerosis (ALS ), a rapidly progressive and invariably fatal disease. Surrounded by people living with ALS, researchers and partners, the ALS Society of Quebec emphasized the importance of keeping the challenge alive. “The Ice Bucket Challenge is an important symbol of hope and a demonstration of solidarity for people living with ALS and their families,” says Chantal Lanthier, who was diagnosed with ALS in 2013 and is a member of the Society’s Board of Directors.
Daily challenges faced by people living with ALS
For those living with ALS and their loved ones, the challenges are relentless. ALS takes a toll emotionally, physically and financially. People diagnosed with ALS face gradual paralysis and death. They slowly lose their ability to walk, talk, swallow and eventually breathe. However their mind remains intact, leaving them locked-in their bodies.
Funds for services and research
Last year’s Ice Bucket Challenge was a huge success. Thanks to the generosity of 79,000 Quebecers, the ALS Society of Quebec received more than $2.66-million in donations. The funds are being spent on ALS research and on enhancing and expanding services for Quebecers living with the devastating disease. “In addition to improving support to those living with ALS, we have just launched two new pilot programs to better support families during every stage of the disease,” says Claudine Cook, Executive Director of the ALS Society of Quebec. “The first, is a financial aid program designed to give respite to caregivers. It will enable them to get help or or to take a little break from their daily life. We know living with ALS causes a lot of financial stress on families; the second program will allow children whose mom or dad has the disease to continue their extra-curricular activities such as sports, music or other hobbies.”
The Ice Bucket Challenge also allowed the ALS Society of Quebec to dedicate $1.7-million to ALS Canada’s Research Program. Combined with a matching gift of $10-million from Brain Canada , a total of $21.5-million will be invested in research thanks to the 2014 Ice Bucket Challenge. These donations are allowing researchers to speed-up their work and will enable them to eventually find effective treatments. “ALS is a terrible, deadly disease. For far too long, it has been overlooked. The Ice Bucket Challenge will give researchers the opportunity to develop effective therapies that will improve the quality of life of those affected. But we need a steady source of funding to reach our goal. Our hope is that by making the Ice Bucket Challenge an annual event, we will be able to continue our work and reach our objective,” says Dr. David Taylor, Director of Research for ALS Canada.
From taking the challenge to facing the challenge
Dean and Paula Stock and their three young children took the Ice Bucket Challenge in August 2014. Little did they know, a few months later, in December, Dean would be diagnosed with ALS. The news came as a huge shock to the family but they quickly decided to do everything in their power to create something positive. “We felt we had to do our part to continue raising awareness,” says Paula.
The ALS Society is pleased to be launching its first public service announcement (PSA) featuring the Stock family. “The goal of the PSA is to educate people about ALS, the disease behind the Ice Bucket Challenge,” says Ms. Cook. “It’s a powerful, heartfelt message that captures why we have to keep the challenge going in order to find treatments and support families,” says Paula.
Because ALS is fatal and there is still no cure, time is of the essence for people with ALS and their families. This August, and every august until a cure, join the wave at als-quebec.ca.
About the ALS Society of Quebec
Founded in 1983, the Amyotrophic Lateral Sclerosis (ALS) Society of Quebec is a non-profit community organization. Our mission is:
- to provide support and referrals for people living with ALS and their loved ones;
- to fund research;
- to raise awareness of this disease among the general public, government officials and medical and paramedical practitioners.
For more information:
Renée Myriam Larabie, Communications Coordinator, ALS Society of Quebec
514 725-2653 ext.102, [email protected]
Claudine Cook, Executive Director, ALS Society of Quebec
514 725-2653 ext. 102, 514 298-0540, [email protected]