Thank Congress for funding innovation in ALS research and broader access to ALS therapies by sending an email!
ACT for ALS is legislation that passed with overwhelming bipartisan support in 2021 to enable people living with ALS to access promising investigational therapies when they do not qualify for clinical trial participation. According to NCBI more than 60% of people with ALS are not eligible for clinical trials and when diagnosed with the 100% fatal disease are simply sent home to get their affairs in order and are provided with no hope.
ACT for ALS was authored by Congress in partnership with the ALS community including I AM ALS, individuals living with and impacted by ALS, medical professionals, scientists, and collaborating organizations. The intent of the law is to provide access to promising therapies to people living with ALS and increase the research data being gathered to help strengthen and speed up the clinical research for this always fatal disease.amount of innovative ALS clinical research occurring.
To date, ACT for ALS has funded five expanded access studies:
- Seelos’ Trehalose (The HEALEY ALS Platform Trial- Regimen E)
- Prilenia’s Pridopidine
- Rapa Therapeutics’ RAPA-501
- Clene’s CNM-Au8
- MediciNova’s Ibudilast
In total, these five expanded access programs provided access to promising therapies for 610 people living with ALS who did not qualify for clinical trials. These programs expand access to places that do not always have easy access to clinical trials through opening EAP sites in underserved areas and through experimenting with telemedicine.
In addition to providing broader access to therapies, these A4A EAPs examine potential biomarkers (ways to detect or measure ALS progression), the use of tele-medicine and remote clinical trial assessments, and the role of machine learning in predicting ALS progression.
Fill out this form to thank your US Senators and Representative for their work on this important bill!