ALSA Patient and Caregiver Advisory Committee (PCAC) Involvement

Natalie Fernandez recently became a member of the Patient and Caregiver Advisory Committee (PCAC) at the National Chapter of ALS Association (ALSA). The PCAC is co-chaired by John Russo and Ken Menkhaus who are both incredibly knowledgable and influential ALS advocates. If you are interested in learning more about their perspective, Ken has a blog called, Ken’s Caucus. The PCAC currently has 20 members and each member serves two year terms. The purpose of the committee is to provide informed guidance to ALSA and the ALS Focus Steering Committee. Responsibilities of the committee members include: Generating survey topics, reviewing survey questions, and ensuring patient and caregiver authenticity.

Natalie is honored to be a part of the PCAC. ALSA staff works hard to provide care and support for ALS families. They are also the largest funder of ALS research projects in the world, which is pretty incredible considering they are a nonprofit. While Natalie is aware of the tension that exists between ALSA and more grassroots ALS movements, she is excited for this opportunity to focus and inform initiatives that directly affect families living with ALS. In the words of Sandy Morris, “We are all fighting for the same thing. When we find that we are fighting each other, we are on the wrong path.” It through collaboration and focus on our shared goal that we are going to find a cure for ALS.