Why it Matters

The patient advocacy group is transitioning from external firms to internal lobbying. This shift gives I AM ALS more direct control over its advocacy strategy. The organization previously spent $490,000 with two outside firms since 2019.

By the Numbers

I AM ALS filed its new client registration on September 25, 2025. The organization hired Dustin Watson as its in-house lobbyist.

Team composition: Watson brings experience from the Michael J. Fox Foundation for Parkinson’s Research, where he lobbied on similar neurological disease issues from 2021-2025.

Broader Context

NIH research funding faces significant pressure from recent federal spending freezes. Sen. Dick Durbin and other Democrats have criticized these cuts. The freeze threatens vital ALS research programs that advocacy groups have worked years to establish.

The Agenda

I AM ALS will lobby on federal research funding and regulatory flexibility for ALS treatments. The organization targets three issue codes: Veterans (VET), Budget/Appropriations (BUD), and Health Issues (HCR). Watson will focus on appropriations bills and accelerated FDA approval pathways for promising therapies.

Competitive Landscape

The ALS Association leads competitive advocacy efforts, requesting $180 million for NIH ALS research. The Team Gleason Foundation focuses on equipment access and Medicare issues. Pharmaceutical companies like Biogen Inc. and Amylyx Pharmaceuticals Inc. also lobby on ALS treatment pathways.

Between The Lines

Bipartisan support is growing for key ALS legislation. The Justice for ALS Veterans Act has backing from Rep. Chris Pappas and Senators Chris Coons and Lisa Murkowski. Rep. Jason Crow led a 61-member bipartisan letter calling for $80 million in Defense Department ALS research funding. The Senate already passed an ALS Awareness Month resolution.

The Bottom Line

The in-house move gives I AM ALS greater advocacy control during a critical funding period. Watson’s neurodegenerative disease experience positions the organization well for appropriations battles.

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All data used in this article came from Legis1. Request a demo to learn more!

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