When Anjo Snijders was diagnosed with ALS in 2017 at the age of 35, he and his wife Sascha realized the vision of their future with their two young children in the Netherlands was forever changed. For both Anjo and Sascha, honesty with their children, age just seven and two at the time, was of great importance. Both teachers by trade, they began to look for resources to help explain their daddy’s illness, but found little if anything. And with that, the story of Luki and the Lights was born.
The ALS Association is launching an ambitious slate of federal and state policy priorities for 2023. The priorities build upon the successes achieved and focus on augmenting our work to accelerate the search for new treatments and cures, optimize care for people living with ALS today, prevent ALS, and empower everyone with ALS and their families to live life on their own terms.
Jaci Haakonson has been a caregiver to her husband Ted for ten years now. They were "lucky" in many ways early in Ted's diagnosis, but living with ALS shouldn't be dependent upon luck.
The ALS Association is committed to advancing critical policies that help to find new treatments and cures, optimize current treatments and care, and prevent or delay the harms associated with ALS. State policymakers have the power to change the future of ALS by taking action on The ALS Association’s public policy priorities.
The ALS Association is committed to advancing critical policies that help to find new treatments and cures, optimize current treatments and care, and prevent or delay the harms associated with ALS. State policymakers have the power to change the future of ALS by taking action on The ALS Association’s public policy priorities.
The ALS Association has awarded nearly $800,000 to support 16 innovative research projects that have the potential to significantly impact the experience of ALS by optimizing current care and treatments, finding new treatments and cures, and aiding with diagnosis and prevention.
ALS doesn’t care where a person lives, and a person with ALS in Florence, Italy is as much in need of reliable care and resources as someone in Florence, South Carolina. At the International Alliance of ALS/MND Association meeting in late 2022, proud “Mapper” members Amanda Stanko, senior solution engineer at Esri, and Pat (who joined remotely) shared how they are taking their clinic mapping tool internationally to provide the resource for people with ALS around the world.
The ALS Congressional Caucus brings members of Congress from the House and the Senate to advocate for treatments and find a cure for ALS. The ALS Caucus seeks to raise awareness about the challenges faced by people living with ALS and their families, promote investment in groundbreaking research to end ALS and develop new therapies, and to think creatively about policy solutions to reduce the negative impacts of ALS.
Late in 2022, more than 200 leaders from over 40 countries representing the Alliance’s many member associations came together, both in person and virtually, to share updates on the progress being made around the world in ALS care, support, technology, science and organizational development.