In May 2026, a coalition of nonprofits and patient advocates went to Albany, NY to lobby for the Dennis Crawley Genetic Protection Act. Named for a beloved coach who passed away from hereditary ALS, the bill would expand protections against genetic discrimination. Currently, under federal law, employers and health insurers may not use an individual's genetic information to discriminate against her. However, other insurers, such as disability, long-term care, and life insurers, may do so. This bill would prohibit this. 

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The ALS Association and ALS United Greater New York led our coalition. I went on behalf of FORCE: Facing Our Risk of Cancer Empowered. Senator Cordell Cleare and Assembleymember Jeffrey Dinowitz, two of the bill's sponsors, spoke in support of it. Several nonprofit professional and four patient advocates, including Mr. Crawley's daughter Ashley, also did so.