The ALS Association Board of Trustees met in Chicago this weekend, and for me it was the final meeting before I rotate off the board, after serving for three and a half years. It’s been an education, and a privilege to serve with so many very smart and dedicated people. These were not easy years. The COVID pandemic was highly disruptive for all service-oriented non-profits; the Association went through a complex process of internal restructuring which will put it in a position to do its work more effectively and efficiently; and the wider ALS advocacy ecosystem has at times been turbulent and not as collaborative as many of us want. But it has also been a period where we are seeing more promising results in research on ALS therapies to slow down or stop the disease, bringing us closer to the goal of making ALS a livable disease by 2030. And the ALS community has had some real successes advancing public policy goals and increasing funds for research on ALS.
I opted not to renew for a second term on the Association Board because I would like to be able to speak and write on ALS matters more frankly, and I couldn’t do that as a Board member without potentially creating complications for the Association. Some of us living with ALS are beginning a conversation about creating an independent platform for more open and thoughtful deliberation about ALS-related issues, far from the echo chambers of social media. I hope to have more news on that soon.
Ken's Caucus 