My Strategy
Though ALS treatment options have always been really bleak, there are stem cell drugs (NurOwn) that have finished late stage trials that are showing immense promise in about half of ALS patients - and this could provide the first long-term bridge to a future cure.
You know me. I’m a campaigner and this is my new campaign. My topline strategy is:
Do all I can to pause or reverse my symptoms.
In addition to the two FDA approved therapies for ALS (Riluzole and Radicava) there are supplements and drugs that are showing promise in trials. While not yet approved, they can be accessed by paying out-of-pocket. Slowing down disease progression and buying time is key because more effective drugs are on the way.
Reduce stress and optimize our quality of life.
Stress furthers inflammation which furthers ALS symptoms. I’ll continue acupuncture, physical and massage therapy, and other integrative treatments to support me and my holistic treatment plan.
Help expedite access to drugs that work.
NurOwn just completed its Phase 3 clinical trial, and it is showing positive results in slowing, pausing or even reversing ALS symptoms. This is the most promising news that we’ve seen from ALS research, and I believe it can and will save lives. Drug combinations like AMX0035 have shown significant promise in trial and should be approved immediately.
Demand ALS patients’ needs come first.
Everyone should have immediate access to any ALS therapies that have been shown to have significant, positive impact -- including those in clinical trials. We need to amplify patients’ needs and streamline the FDA approval process to expand and expedite access. These issues include things like Expanded Access, improved clinical trial design that offers open label extensions, and supporting bills in Congress that give ALS patients improved access to promising therapies. Join the I AM ALS team and the No More Excuses Facebook Group to learn more about how to advocate for these changes.
Help expedite a cure.
We will continue to support any advocacy and research that advances the urgent need to reduce suffering and save lives. We need a cure, and we need it now. Visit www.IamALS.org to help.