Now is the time for change. More than 3,000 people and families throughout Canada continue to face the profound emotional, financial, and psychological impact of living with ALS. Their collective experience is core to every action we take and decision we make. And every person affected by this devastating disease is reason enough for our work to change the reality of ALS.
Our 2019 Annual Report to the Community, entitled For What Counts, shares the critical impact and progress made last year that is getting us closer to a future without ALS. Creating this reality unites the ALS community, and by working together we can support people and families affected by ALS, accelerate scientific discovery towards developing new treatments, and improve access to innovative therapies in a timely way.
Each day, we are driven by our goal of transforming what an ALS diagnosis means today and in the future. Our work is grounded in the three pillars of our strategic plan: people affected by ALS receive the best possible standard of care, have a better quality of life because of the treatments that are available, and are empowered to make informed decisions. Our supporters in 2019 advanced all of these areas – through their essential and generous contributions, they:
Helped nearly 1,000 Ontario families affected by ALS by enabling them to receive 2,800 pieces of equipment at no cost and benefit from 7,200 personal touchpoints with our Regional Managers (including nearly 1,500 in-person visits) to better navigate their journey with ALS; and supported the first-ever pilot ALS Caregiver Day in Toronto that provided family caregivers with a connection to others in the ALS community.
Enabled $1.4 million to be invested in leading-edge Canadian ALS research projects, which are fueling scientific discoveries and helping to maintain the momentum for ALS therapy development. In addition, furthered the infrastructure development of CAPTURE ALS, a national initiative to further understand ALS.
Made it possible for nearly 30 government meetings to take place between the ALS community and elected officials, with a focus on advocating for improved funding and policy changes, as well as access to therapies with thousands of Canadians taking part in a letter-writing campaign leading up to the 2019 federal election.