ALS Focus Patient and Caregiver Advisory Committee
People with ALS and caregivers are at the center of ALS Focus. Members of the ALS Focus Patient and Caregiver Advisory Committee (PCAC) are leaders in the ALS community and represent the voices of people living with ALS and caregivers. The PCAC provides valuable feedback and advice to the ALS Focus Steering Committee and Association leadership. PCAC members lend their expertise and experiences with ALS to offer insights on the following:
- Potential survey topics
- Survey question development, relevance, and clarity
- Usability of programmed surveys
- Review of ALS Focus reports and publications
The Chair of the PCAC is Ron Faretra, who also serves on the ALS Focus Steering Committee. The committee meets and provides feedback as needed throughout the year, either in person or virtually. Travel is not required to participate.
We are always looking for volunteers to serve on our ALS Focus Patient and Caregiver Advisory Committee. If you would like to join the PCAC, please send a message to [email protected].