AEW’s Rebel is urging fans to sign a petition calling on Congress to reauthorize legislation supporting ALS research and access to investigational treatments.
Tanea Brooks, who disclosed her ALS diagnosis in May, issued the appeal yesterday after returning home from this week’s AEW Dynamite: Rebel Heart special.
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Brooks said she received an urgent message from I AM ALS regarding the Accelerating Access to Critical Therapies for ALS Act, commonly known as “ACT for ALS”.
The existing legislation is due to expire September 30. Brooks said there was a possibility that Congress could delay completing the reauthorization process until later in the year, stressing that people living with ALS do not have time to wait.
Renewing it will secure another $500 million for ALS research and treatment access. Even though it has unanimous support, Congress might keep pushing it off until the end of the year or longer.
Please sign your name to this petition and tell them that’s not ok. ALS deserves your support, and needs it now. We can’t afford to wait.
The original ACT for ALS was signed into law in December 2021 and authorized up to $100 million annually over five years.
Among its provisions are grants supporting research involving people with ALS who cannot participate in clinical trials but receive investigational therapies through expanded-access programs. The legislation also established programs aimed at improving research and drug development for ALS and other rare neurodegenerative diseases.
Reauthorization has received broad bipartisan backing. The House and Senate have each passed legislation extending ACT for ALS through 2031, but approved different versions that still need to be reconciled.
The ALS Association urged Congress last month to complete that process before the September 30 expiration date to avoid an interruption to the programs.
Brooks became an ambassador for the patient-led advocacy organization I AM ALS in June and has used her platform since her diagnosis to raise awareness and funds.
Wednesday’s Rebel Heart edition of Dynamite in Athens, Georgia, was dedicated to Brooks and the fight against ALS. AEW made a donation from the event to I AM ALS and Team Gleason, while Brooks appeared alongside longtime on-screen partner Britt Baker.
The petition calling for ACT for ALS to be reauthorized can be signed at iamals.org/a4apetition. The signatures are expected to be presented to Congress on Monday.
