I want to devote as much energy as I can to the fight to defeat ALS and provide support to people with ALS and their caregivers, and the ALS Association has given me multiple opportunities to do this. I have now been asked to serve on their Public Policy and Communications Committees, and co-Chair the Patient and Caregiver Advisory Committee. There are a lot of issues to address and initiatives to pursue, and I hope to use this blog to share ideas and resources with others who are part of the ALS family. For now I’m still trying to get up to speed on all of the many issues I need to know more about. I’m monitoring and joining on-line forums for people with ALS to hear their concerns; reading up on the processes and policies of medical research and NIH grants; learning more about legislative asks we are pursuing; studying the literature on rare diseases; and mapping out the complex ALS political and social ecosystem, including relations between the many different advocacy and service groups working on ALS.
Ken's Caucus 