Living With ALS: In Conversation with Neil Trautwein

After a career advocating for employers and healthcare policy, Neil Trautwein now describes himself as an advocate with a “client of one.” Diagnosed with ALS in July 2025, he is using his experience and policy background to push for research, treatment access and stronger support for people living with the disease.In this conversation with Health Dame host Robin Strongin, Neil explains how early symptoms led to his diagnosis, how ALS has affected his mobility and daily life and why support from family, friends and advocacy groups has mattered. He also discusses the financial demands of ALS care, the value of multidisciplinary clinics and the effect the disease has on caregivers.Neil shares his work with I AM ALS and the ALS Association, including efforts to reauthorize the ACT for ALS. The legislation supports research, data sharing and expanded access programs for patients who may not qualify for clinical trials. He also reflects on emerging treatments, the possible role of artificial intelligence in research and his hope that continued progress will lead to a cure.It is a personal conversation about adapting to change, accepting support and choosing to remain engaged while living with a progressive disease.