On average it takes 10-15 years and $150M to develop a drug (RAND, 2025).
Several variables over the years have incentivized the development of ALS therapies. These include but are not limited to:
- The Orphan Drug Act
- Incentivized drug companies to develop drugs for rare diseases by granting extended patent protection, providing a tax credits for R&D costs and providing access to federal research grants.
- The ALS Ice Bucket Challenge (2014)
- Brought international attention to the urgency of the need facing those living with ALS.
- Congressionally Directed Medical Medical Research Program
- This program granted $270M to ALS Research from FY2009 to FY2023.
It is also notable that ALS seems to affect very generous, high net worth individuals such as Ed App (CEO of Caterpillar), John Diskell Hopkins (Zac Brown Band), Augie Nieto (Life Fitness), Sean Healey (Affiliated Managers Group), Nancy Ryder (publicist), Steve Gleason (NFL player), Eric Dane (actor) and more. The legacy of these individuals has funded innovative solutions such as ALS Therapy Development Institute and the Healey Platform Trial.
In summary, the drug development community has amassed both the time and the money needed to develop a number of promising drugs for ALS.
The companies listed below all have ALS drugs in their clinical development portfolios. This is encouraging because when Martha had ALS in 2012, there was only 1 clinical trial option. Click logos below to learn more about the drugs that could reach the market anywhere from 2-7 years from now. If you are a person living with ALS who either wants to enroll in a trial or would like to explore expanded access program options, please email moffoundation@gmail.com.
