When we come together as one team with one mission, we have an opportunity to change the world.
When the Food and Drug Administration approved AMX0035 (now known in the U.S. as Relyvrio) in September, it was the culmination of years of work from people all over the country, including the millions of people around the world who took the Ice Bucket Challenge, which provided funding for the research into the treatment.
This year, while FDA was considering whether to approve the treatment, we led our community to come together as tens of thousands of advocates urged the FDA to act with urgency to approve the drug this year, and as leading ALS clinicians from across the imploring the FDA to approve the treatment. We immediately moved into the next phase of our fight to access, urging health insurers to make the treatment available – efforts that paid off when when the VA made Relyvrio available to veterans living with ALS.
Across our mission, we saw amazing progress in the fight against ALS in 2022:
- In addition to Relyvrio, FDA this year approved an oral formulation of edaravone and accepted a new drug application for tofersen.
- Congress passed a funding bill that includes nearly $200 million for ALS research and programs, an increase by over 20 percent from the previous budget. And the National Academy of Sciences launched a $1 million study into how to make ALS livable.
- Three new clinics have received the designation as ALS Association Certified Treatment Centers of Excellence since the beginning of the year, meaning more people have access to the highest quality care. More than 30 additional clinics in process toward achieving their formal designation.
- We launched The ALS Association Center & Clinic Locator, a new tool to make it easier to locate and access ALS multidisciplinary clinics via city or ZIP code.
That’s just some of the great things we accomplished in 2022.
Please check out our 2022 year-end report and get updated on some of the victories 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 doing whatever it takes to end ALS.