Between August 8 and December 31 2014, over $17 million was raised within Canada through the Ice Bucket Challenge. Leveraged with a match of an additional $10 million from Brain Canada and the Federal Government the total is over $27 million for ALS research and support services for the ALS community in Canada. Globally the number is estimated at $220 million.
While it is a significant amount of money that was generated, it is still a ‘drop in the bucket’ to what is needed. The Economic Burden of ALS study1 that was published in 2014 demonstrated the cost to a working age, Canadian family to be $150,000 - $250,000 in direct and indirect costs over the short window of the diagnosed person’s life.
ALS Canada fulfills a crucial role in Ontario in helping approximately 1100 people living with ALS and their families to navigate the realities of ALS through in-home visits, education, support and bereavement groups and the provision of equipment whether through an established loan pool or direct funding. The support that we have been providing for many years helps offset some of the costs associated with the financial and emotional burden.
We will be making investments with the funds from the Ice Bucket Challenge to ensure our core programs are sustainable for the future and identifying other projects that will help ease the hardships associated with ALS.
ALS is a complex disease, so understanding the cause and potential treatment is more challenging and therefore more costly to solve. Due to a relatively small population that is living with the disease, it has made it more difficult to secure funding.
As early as December funds from the Ice Bucket Challenge and matching funds from Brain Canada were used for additional Discovery Grants and the Arthur J Hudson Translational Research Grant.
We will continue to make investments that will:
o accelerate research discoveries;
o foster collaboration and infrastructure within the Canadian research community.
We continue to advocate at a federal level for changes to the Compassionate Care Benefit. This would provide caregivers with income support for 35 weeks instead of the 6 weeks that is offered within the current program. Given the profile of the meetings we have had with government officials and bureaucrats in Ottawa we are hopeful that we may see the change in the Federal Budget for 2015. Depending on the number of people who access the program, it is estimated this could provide $5M - $10M in direct income support annually to Canadian families living with ALS.
As a solely donor funded organization, we are now gearing up for our significant events which happen between May and October. We hope you will come out and support one of the 32 WALKs for ALS which will be held in Ontario. In 2014 we had a goal of $1.775M for Ontario and raised $2.1M, we have now set a target of $2.25M for Ontario and $4.3M for Canada for the WALKs. Not only are the WALKs a significant fundraiser, they are also a tremendous way for the ALS community to come together – both for people currently living with ALS but to also remember and honour people who have passed away. As I attend the WALKs around our province, I am constantly touched by the incredible people I meet and their very powerful, personal stories.
The ALS Canada Golf Classic on Thursday June 4, will be held at the prestigious private King’s Riding Golf Club. Bring a foursome and join us at this renewed tournament. The ALS Canada Bombardier Plane Pull will be moving to the early fall – stay tuned for more information on this novel team building activity. For the cycle enthusiasts, come join us for either a 20 or 70km ride at the Jim Hunter ALS Cycle for a Cure on September 27.
At ALS Canada, we are honoured to serve the brave people who live with the realities of ALS. We are incredibly appreciative of all of the volunteers who give so tirelessly to support the needs of the community and raise the much needed funds. We have tremendous gratitude for the many donors who continue to support the cause. Together, we will make ALS a treatable, not terminal disease.
1. Economic burden of amyotrophic lateral sclerosis: a Canadian study of out-of-pocket expenses. Gladman M. et al. (2014)