We have made a promise to the ALS community–we will make ALS livable for everyone, everywhere, until we can cure it. But it will take all of us—working together—to accomplish that goal.
It will take researchers and clinicians collaborating to find new treatments and cures. That means more clinical trials and patient participation in research. That includes finding ways to optimize treatments and care, increasing access to that care, and improving assistive technologies to help people with ALS live the way they want, with a better quality of life.
It also means we will need to prevent or delay the harms of ALS. We need to diagnose the disease sooner and find ways to identify ALS risk factors so we can prevent it altogether. And as new treatments are available, we need to fight for policies and access to allow people with ALS the chance to get the help they need sooner.
Across our mission, we saw incredible progress in the fight against ALS in 2023, and we want to share some of the impacts we have made this past year, thanks to you:
- Our community experienced a huge win this past April when the U.S. Food and Drug Administration approved tofersen (Qalsody) for the treatment of people living with ALS connected to mutations in the SOD1 gene. This marks the first time the FDA has approved a treatment for ALS under accelerated approval pathway and it was the second time in less than a year and the third time in six years the agency approved a new drug to treat ALS.
- We continue to build the future of ALS research by supporting 149 active research projects in 13 countries around the world.
- This year, we achieved unprecedented success in our fight for state appropriations, securing funding for ALS care services, clinics, and research. Thanks to the tireless efforts of our advocates, we secured more than $20 million from 15 states.
- Last spring we launched My ALS Journey™, a web-based platform connecting people with ALS to personalized resources and assistance. To date, more than 4,500 people from all 50 states and 76 countries have used this new tool.
And that’s just some of the things we were able to accomplish in 2023. Please check out our 2023 year-end report and get updated on more of the wins we shared this year.
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 us in the fight to end ALS.
Wishing everyone a happy and peaceful New Year!
To continue to follow stories about people living with ALS in the community and learn more about the disease, follow our blog HERE.