CIRM honors the contributions of Fred Fisher, MSW, LCSW, a dedicated member of our Independent Citizens’ Oversight Committee (ICOC) and a passionate patient advocate. Fred passed away in September.
He joined the ICOC as the ALS patient advocate in June 2021 and served in many roles, including co‑chair of the Standards Working Group and member of the Application Review Subcommittee, Task Force on Neuroscience and Medicine, Presidential Search Subcommittee, Facilities Working Group, and Grants Working Group.
Beyond his enthusiasm for CIRM’s mission, he showed unwavering commitment to advancing research for people living with neurodegenerative diseases.
For more than 20 years, Fred served as President and CEO of the ALS Network(formerly ALS Golden West), an organization dedicated to finding effective treatments and cures for amyotrophic lateral sclerosis (ALS). He also brought over 35 years of leadership experience in nonprofit social service and health organizations, serving children, families, seniors, high‑risk youth, and individuals with mental health needs.
A tribute to Fred is available on the ALS Network website.
We asked members of the CIRM community to share their thoughts and memories of Fred Fisher. Here’s what they said:
Jonathan “JT” Thomas, PhD, JD: CIRM President and CEO
Fred’s passing was a tremendous loss to his family, the ALS community he championed, and to CIRM. On our Board, he was a true opinion leader. He served actively on the Application Review and Presidential Search Subcommittees and on the Task Force on Neuroscience and Medicine.
He was also a long‑time member of the Grants Working Group (GWG) and co‑chaired the Standards Working Group (SWG). But it wasn’t just the number of roles he filled—it was the quality of his service. Fred showed up every time, even on difficult days. He brought a principled approach that put process above everything else. He reminded us of our responsibility to California taxpayers and pushed us to make tough, process‑driven decisions, even when they weren’t popular.
I spoke with Fred many times over the years, but one conversation stands out. I called him, as Chair, to ask if he would co‑chair the SWG. Fred wasn’t a bioethics expert, but his unwavering principles made him the natural choice. We discussed the issues the SWG would face.
As we talked, he grew more enthusiastic and gladly accepted. He thanked me for “thinking of him” and recognizing that “someone like me can contribute in ways that are outside my comfort zone.” I laughed and told him, “Are you kidding? I can’t think of a better person for the task,” and thanked him again for bringing his zeal and optimism to CIRM.
It’s hard to imagine the Board without him. Our discussions were always stronger with Fred in the room. I deeply appreciated everything he gave to CIRM and to the patients we serve, and I will miss him very much.
Vito Imbasciani, PhD, MD: Chair, Independent Citizens’ Oversight Committee (ICOC)
Fred Barnett Fisher joined CIRM in 2021 as a Board Member and Patient Advocate for neurodegenerative diseases, especially amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS). We all felt his loss deeply. His intelligence, compassion, and accomplishments shaped our work and our community. We will remember his pointed questions after leadership presentations, his challenges to assumptions and numbers, his firm reminders to follow the rules, his dedication to patients and families across California, and his genuine, affable nature.
When we first met, Fred mentioned his personal challenge in a brief, matter‑of‑fact way. He never brought it up again. In every conversation after that, he focused on CIRM—asking how the restructuring would strengthen our mission and expand our promise to the people of California. At his funeral, the rabbi described him as a consummate practitioner of tikkun olam, the imperative to repair and improve the world. Speaker after speaker made it clear he lived that mission every day.
Fred was the driving force at the center of many communities: his loving family, the ALS network of patients, caregivers, researchers, and clinicians, and the world of CIRM. He gave so much of himself that each group likely felt they had a special claim to him. He worked to ease burdens, strengthen communities, and make things better for everyone he touched.
For his wife, his children, the Golden West and other ALS chapters, for CIRM, and for the thousands whose lives he influenced—whether they knew him or not—Fred did good in this world. And he did it until his very last day of work.
Maria Gonzalez Bonneville: Vice Chair, Independent Citizens’ Oversight Committee (ICOC)
Fred Fisher was a beloved member of the CIRM Board. He took his commitment to CIRM and the people of California very seriously. This summer, I was able to meet up with him for an afternoon coffee. We talked a lot about his grandchildren and his joy at being part of their lives. He left me with “Remember what’s really important, Maria, and let everything else go.” He will be missed.
Linda Nevin, PhD: Sr. Science Officer
Fred became a CIRM Patient Advocate shortly after I joined the staff, and I attended his orientation with the Review Team. He shrugged now and then, occasionally rolling his eyes—a mix of self‑deprecation and confidence that immediately stood out.
Over the next three years, he proved to be one of our most insightful and modest advocates. He was always candid about not being a scientist, yet he contributed meaningfully across all topics. He approached advocacy with rigor, drawing on his deep experience with ALS Golden West and his commitment to evaluating diversity, equity, and inclusion in grant proposals. In meetings, he asked incisive questions and ended them with his signature shrug.
I have two favorite memories of him. In one review, he used his platform to remind us of the value of the patient perspective, offering an impromptu tribute to a fellow GWG Board Member who joined after receiving an experimental spinal cord injury therapy. On another occasion, he ended his critique of a proposal by inviting a physician‑scientist and DEI expert to explain to the panel why everything he’d just said was wrong.
I miss him.
Lana Moralez: Sr. Executive Assistant
Fred always asked the tough questions. He was deeply engaged and consistently available whenever we needed him. His kindness and care will be truly missed. He dedicated his time and energy up until the very end. I will deeply miss him.
Lila Collins, PhD: Associate Director of Portfolio Development
Fred was an outright champion for ALS. I attended multiple ALS Golden West annual meetings over the years starting in 2015. I was always impressed by the collaborative, determined nature of those in attendance. ALS Golden West fostered a tight knit community of patients, scientists and physicians. Every year, I’d return from the meeting refreshed.
I guess perhaps I do have a story from the last ALS Golden West annual meeting I attended in January of 2023. There was a gala on the last night of the meeting, with an auction. It was very compelling! I, a single mom with two children in college, had absolutely no business attending, let alone bidding in, a charity auction. But it was for ALS! I got so excited about the cause I bid for an item, and I won! There’s no way I would have bid $3,000 for any other cause. It was my honor to play some small part for this community, and I don’t regret a penny of it.
Fred was equally passionate about CIRM. I’ll miss him. Here’s to you, Fred!
Mark Fischer-Colbrie, MBA: ICOC Board Member
Fred Fisher had a real impact on CIRM. I had the terrific opportunity to spend many hours with Fred as part of the Grants Working Group, Facilities Working Group, Applications Review Subcommittee and the CIRM Board. I always paid very close attention to Fred’s analysis and comments as he was great at distilling key elements around a decision that assured clarity to all parties involved. That clarity and excellent framing of issues and opportunities ensured that the team could ultimately make the best decisions.
His approach was open, friendly and grounded. I came to rely on Fred providing the voice for us to make sure we had properly considered the right criteria. What is even more amazing is that Fred was able to do all of his hard work while dealing with his challenging health issues. Yet it was accomplished with grace and in a way had no impact on his work, his intellect or his skills. I and the expanded CIRM team will very, very much miss him. My condolences to his family, friends and colleagues as we have lost a great person.
Mohamed Abousalem, PhD: ICOC Board Member
I was always impressed with how much Fred committed his energy and attention to help the growth and impact of CIRM’s programs. He will be missed on the CIRM board, and I am sure he will be equally missed everywhere else. May he rest in peace.
Le Ondra Clark Harvey, PhD: ICOC Board Member
Fred was my appointee twin. Both he and I were appointed at the same time by the lieutenant governor, and we had crossed paths previously. The founder of my organization had passed because of an ALS diagnosis and complications. We were connected in the advocacy world already, and it was even more meaningful to join CIRM at the same time. I would describe him as a consummate advocate for the things that he believed in. And I think that that’s something that I will hold on to from him and appreciate the opportunity to serve with him in this capacity.
Liz Noblin, PhD: Former CIRM Science Officer
I was so sorry to learn of Fred’s passing! Fred taught me what it meant to be a patient advocate. I appreciated working with him and his perspective greatly, and his family is in my thoughts.
Chuck Cox: Grants Working Group Member
We all came to know Fred via the Grants Working Group, and Fred served as a tireless advocate for excellence in research that would serve those in need. He had a keen eye for relevance in research, not only for his personal battle with ALS but for all diseases causing suffering. I know that we in the extended CIRM family will miss his contributions and presence. My deepest condolences to the Fishers.
Brian Harfe: Grants Working Group Member
That is terrible news about Fred’s passing. He was always a calming presence in our review sessions and when Fred had something to say, EVERYONE listened.
Esteban Cortez: Director, Marketing & Communications, CIRM
I will miss Fred’s contributions to the CIRM board. He often offered meaningful insights and was instrumental in keeping the decision-making process focused and to the point. This is a big loss for the CIRM community and patients everywhere. My condolences go to his family and friends.
Lisa Kadyk, PhD: Therapeutics Development Associate Director
I never met Fred Fisher in person, but I saw him in action at many grants working group and board meetings. He was a patient advocate board member who was very involved and reliably made pertinent observations and suggestions in those meetings. As recently as a couple of weeks ago I had jotted down in my notebook some comments he made that I appreciated, that showed he was thinking about the big picture at CIRM. My sincere condolences to his family and friends.
Gil Sambrano, PhD: Vice President of Portfolio Development and Review
Fred was an outstanding supporter of CIRM and an exemplary patient advocate on the GWG. He understood the importance of following process, maintaining rigor, and advocating for the best science to help patients in need. As a GWG member, he took his duties with the utmost seriousness and served as a model reviewer for others to emulate. Whenever the occasion arose, he was a compelling voice of reason that brought discussion to the heart of the matter. His perspective, commitment and thoughtfulness will be greatly missed in our review panels.
Claudette Mandac: Board Governance Associate Director
I struggled to write this because it meant accepting he’s gone. Then I found a line in a poem by Becky Hemsley: “Do not reduce my life to my death.” I’ve only known two months of CIRM without Fred, and I’m grateful we can remember him through transcripts and recordings. I carry many memories of him that are still too hard to write about, so instead I’ll focus on the qualities I’ll always remember:
Fastidious and fearless – He paid attention to everything, from reviewing grants for clarity and completeness to responding quickly to anything that came his way. He asked hard questions, pointed out discrepancies, and championed the processes and promises that helped CIRM earn California’s trust.
Respectful – He respected the work staff produced and always gave credit for their diligence. He valued everyone’s time and kept us focused so we could move forward.
Even‑handed and ethical – In every meeting, he treated everyone the same. He was consistently fair.
Dedicated and dependable – He showed up prepared, engaged, and attentive. He took his role seriously, and we could always rely on him to speak up, guide us, and help us stay on track.
Fred, I miss you. I’m grateful for you. And I will remember you.
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