This week, Mike and Jeremy turn their focus to ALS Focus, a survey platform that brings the needs and perspectives of people living with ALS to the center of our fight. They are joined by Dr. Sarah Parvanta, director of ALS Focus, and John Robinson and Lora Pollari-Welbes, two members of the ALS Focus advisory committee, to walk us through what we learned from the first survey and how listeners can get involved.
To learn more about ALS Focus, go to https://www.neuroserver.org/als-focus/Home/wiaf
To participate in future ALS Focus surveys, check out https://www.neuroserver.org/als-focus/Home/login
Read more about the results of the first ALS Focus survey here https://www.als.org/stories-news/als-focus-survey-1-key-findings-show-high-financial-burden-als-community
Check out bios for the ALS Focus Patient and Caregiver Advisory Committee here https://www.als.org/als-focus/als-focus-structure
This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.