Historic federal investment is actively evolving and advancing the ALS research landscape. In 2026, community members, advocates, and ALS organizations helped secure $313 million in federal funding for ALS research- the largest annual investment in the history of the disease. Since 2019, federal funding for ALS research has grown to more than $1.6 billion, after remaining largely unchanged for decades.
A major component of the recent federal investment is the Accelerating Access to Critical Therapies for ALS Act (ACT for ALS), which was approved in 2021. Since then, the ACT for ALS has enabled the initiation and expansion of critical ALS research programs and collaborative projects. It has supported the implementation of expanded access programs, allowing hundreds of people living with ALS to gain earlier access to experimental drugs and therapies, while also strengthening national research infrastructure.
The ACT for ALS has supported a variety of initiatives that foster collaboration between government agencies, ALS research programs, scientists, pharmaceutical companies, and non-profit organizations. These efforts have led to the creation of large, shared research datasets and increased data transparency, such as through the ALL ALS Consortium’s ALS Knowledge Portal. These collaborative projects have also led to an accelerated understanding of the disease, including the identification of different ALS subtypes and potential biomarkers, which are critical steps towards developing more targeted treatments and, ultimately, transforming ALS from a fatal disease into a manageable condition.
In recent years, there have been many meaningful advancements, including a treatment that can extend life for people with a specific genetic form of ALS. As we look forward, researchers aim to build on this momentum to develop effective therapies for the broader ALS population.
Historic funding, increased collaboration, and expanded research participation are accelerating research breakthroughs and broadening opportunities for ALS community members. Together, with continued support from the federal government and the collective work of the ALS community, we remain committed to the ultimate goal of a future without ALS.
This section was developed in collaboration with I AM ALS. To learn more about I AM ALS, visit their website: https://www.iamals.org/