Message from ALS Canada Chair and CEO

ALS Canada had a break-through year in 2015 with solid progress in all areas of our organization. 

We constituted a Client Services Advisory Council (CSAC) to help inform and guide the Board’s long-term vision for Client Services. This Council possesses broad skills and expertise across the healthcare, government and medical equipment sectors and includes the valuable experience and voice of caregivers and people living with ALS. It follows on our commitment to continuously improve the service and support we provide to Ontarians living with ALS and their caregivers. As we work towards finding a treatment for ALS, we are committed to ensuring we have the capacity and resources to meet the needs of people living with ALS, today and in the future. 

It was our continuing pursuit of putting the needs of the ALS community at the forefront where we saw our efforts come full circle around the issue of the Compassionate Care Benefit (CCB). The federal government extended the CCB so that caregivers can claim up to $13,624 in benefits to relieve some of the financial burden ALS incurs on families. This was achieved through many years of collaboration and leadership of ALS Canada working with the Societies across Canada, volunteers and people living with ALS who spoke passionately with members of Parliament to communicate the realities of families dealing with ALS. 

Volunteers were instrumental in gaining momentum in our fundraising and awareness efforts across the province. The WALK for ALS raised $1.9 million in Ontario and a total of $4 million nationally. We thank all the volunteers who donated their time generously to our signature events and to their own community fundraisers. We were also pleased to engage a new group of volunteers with the launch of the ALS Canada Ambassador Program; people from the ALS community who raise awareness by sharing their personal stories on their experiences with ALS. 

Partnerships with both the Brain Canada Foundation and the federation of ALS Societies across Canada supported our momentum towards meeting our vision of making ALS a treatable, not terminal disease by 2024. We were able to leverage our national ALS Canada Research Program to announce an historical investment of $15 million into the most promising, peer-reviewed Canadian ALS research across the country. Our thanks go out to all the donors who contributed funds to make this year so successful. 

We have great appreciation for the Board members who come from across Canada and generously share their expertise to lead our complex organization, their contributions are significant as we gain momentum. It is with sadness that we said good bye to Melanie York, a Board member, passionate advocate, and cherished member of our team who passed away earlier in the year.

Nurturing relationships and building networks amongst local, provincial and international ALS stakeholders continued to be one of our priorities. This year, CEO, Tammy Moore, joined the International Alliance of ALS/MND Associations Board of Directors, connecting ALS Canada to the world-wide community of ALS organizations. The Alliance functions as a forum for the exchange of information on all aspects of the disease, including research and management of client care and has proven to be a strong network to keep informed for advances and opportunities for ALS on a global stage.

We are proud of the work we have achieved together as we support Canadians and serve Ontarians living and affected by ALS and the investments in ALS research in Canada. We will continue the momentum to make ALS a treatable, not terminal disease.

Geneviève Bertrand, Chair
Tammy Moore, CEO