The ALS Association is committed to making ALS a livable disease for everyone, everywhere, until we find a cure. That means continuing to support research in the search for new treatments, while advocating with our legislators on behalf of the community and improving access to the critical care people with ALS and their families need regardless of where they live.
And while there’s still much to be done, progress is being made. Never before in the history of this disease have we seen so many talented scientists and researchers, ALS advocates, and health care professionals, working together, providing even more hope for the families we serve.
We are excited to share our 2023 Mid-Year Report, detailing the work and achievements that have shaped the first half of this year, touching on all aspects of our mission: research, care services and advocacy. Some of the highlights worth noting include:
- The FDA approved tofersen to treat SOD1 ALS, marking the second approved treatment in less than a year, and the third in six years! We are currently supporting 165 active research projects in 14 countries, including the United States, and that’s just the beginning.
- Our local care teams and teams of healthcare professionals across the country work each day with one thing in mind—enhancing quality of life for people with ALS and supporting families impacted by the disease. So far this year we have welcomed three new Certified Treatment Centers of Excellence™, and several current affiliated clinics are moving toward formal designation.
- In May we launched a new web-based platform, My ALS Journey™, which connects people with ALS to personalized, valuable resources and assistance. With a personal profile, individuals can learn about the appropriate – and time sensitive - interventions available to truly live stronger and better with ALS. To date, hundreds of people have interacted with this new innovative tool.
- We established a nationwide state policy and advocacy department committed to enhancing our efforts on the state and local level and empowering people living with ALS and their families to fight for better public policies in their own communities. In 2023, we have taken a position on 349 state bills, of which 87 have been enacted, and 8 have been sent to the Governor for signature.
While these are just a few examples of some of the work being done, none of these accomplishments would be possible without you. We deeply appreciate the support, advocacy and collaboration of the ALS community and are grateful to all of you for joining with us.