Fund ALS Research.

Bruce Alber at Providence Healey Clinical Trial – June 2022

ALS is a complex disease, and we're fighting it on all fronts. Scientists are unlocking the mysteries of ALS and the brain – the body’s most complex organ.

Thanks to our donors, our chapter has invested nearly $2.7 million in ALS research since 2012, but it can cost up to $3 billion to bring a new drug to market. The fight is not over – but we just need one cure.

With more research dollars, we can fund novel therapies and funnel them into clinical testing. We can diagnose ALS earlier through genetic counseling and testing. And we can develop new assistive technologies such as the Brain Computer Interface (BCI) research by Dr. Nishal P. Shah at Stanford University that our chapter funded last year to benefit people with ALS with severe speech and motor impairment.

These ALS treatments can never come soon enough for the people living with ALS who we know and love. By joining together, we can keep up the momentum and accelerate the pace of discovery.

It's not a matter of if, it's only a matter of when we find a cure for ALS.  

Research Updates

Healey Platform Trial Moves Swiftly
The ALS Association’s $3 million award to fund the first-ever platform trial in ALS is paying off remarkably. Enrollment has progressed three times faster than expected and is now complete for the first four investigational treatments, with initial data expected in mid-2022.

AMX0035 Update
This September, the U.S. FDA will decide whether to approve AMX0035, a treatment from Amylyx Pharmaceutics with the potential to slow decline of function and extend life for people with ALS. Health Canada recently approved the therapy, which will be marketed in Canada as Albrioza, on the condition that Amylyx provide further data on clinical efficacy.

$1 Million for Cutting-Edge ALS Research
This spring our chapter funded two major grants totaling $1,000,000 to support scientists at Johns Hopkins University and Rapa Therapeutics who are exploring highly promising ALS treatments. The awards are made possible through a bequest from John Schaffers, a longtime friend of the chapter who died from ALS in November 2020. 

Oral Edaravone Hits the Market
In mid-May, the U.S. FDA approved the oral formulation of the drug edaravone. Until now, this ALS treatment from Mitsubishi Tanabe Pharma America has only been available through infusion. This new option will help ensure greater ease of use and make edaravone accessible to more people living with ALS. An intravenous formulation of edaravone, Radicava, was first approved by the FDA in 2017. 

The Answer ALS Data Portal
In December 2021, the ALS Association awarded $620,000 to Answer ALS to fund the world’s largest open-source ALS data portal, providing an unprecedented resource for scientists studying the disease. 

Find out more here.