Remembering CIRM board member and ALS patient advocate Fred Fisher

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CIRM would like to honor the contributions of Fred Fisher, MSW, LCSW, a dedicated member of our Independent Citizens' Oversight Committee (ICOC) governing board and an enthusiastic patient advocate. Fred passed away in September.

Fred joined the CIRM ICOC as the ALS patient advocate in June 2021 and held various roles during his tenure, 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.

In addition to his enthusiasm for CIRM's mission, he had an unwavering commitment to advancing research to find treatments for patients and people living with neurodegenerative diseases.

For over 20 years, Fred served as President and CEO of the ALS Network (formerly ALS Golden West), an organization dedicated to finding an effective treatment and cure for amyotrophic lateral sclerosis (ALS). Additionally, he had over 35 years of experience leading non-profit social service and health organizations, including those serving children, families, seniors, high-risk youth, and individuals with mental health issues.

A tribute in memory of Fred Fisher has been posted on the ALS Network website.

We asked CIRM's community to shared 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 which he so passionately supported and to CIRM, among many others. At CIRM, Fred was one of the true opinion leaders on the Board. He actively served on the Application Review and Presidential Search Subcommittees as well as the Task Force on Neuroscience and Medicine. In addition, he was a long-time member of the Grants Working Group (GWG) and co-chaired the Standard Workings Group (SWG). But it wasn't just the fact of that participation; it was the quality. For all of these entities, Fred was a constant, never missing any meetings no matter whether he felt bad that day or not. He had a trademark principled approach that demanded adherence to "process above everything else." In that connection, he reminded us that we owed a responsibility to the taxpayers of California and had to make tough process-driven decisions accordingly even if they were unpopular in the context of the topic at hand.

I had many conversations with Fred over the years. One that stands out was when I called as Chair to ask him to serve as co-chair for the SWG. Admittedly, Fred was not an expert on bioethics. But his unfailing principled stance on all matters made him a natural choice for the position. We talked at some length about the sorts of issues the SWG would entertain. As we did so, he became increasingly enthusiastic and happily accepted the assignment. He thanked me for "thinking of him" and for appreciating that "someone like me can contribute in ways that are outside my comfort zone." I said "are you kidding? I can't think of a better person for the task" and thanked him for his willingness to bring his zeal and enthusiasm to the CIRM table yet again.

I'm having a hard time picturing the Board with Fred not there. Our discussions were always better and more productive with Fred an integral part of the mix. I greatly appreciated all that he did for CIRM and the patients we serve and 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 disease, especially patients suffering from amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS). His loss was felt keenly by every one of us which is partly in testimony to how much intelligence and compassion he brought to the work of his organization and partly to how much he accomplished in his years with us. We will all remember Fred's questioning after presentations from CIRM leadership, the penetrating challenges to suppositions and numbers, his not-so-gentle reminders to stick to the rules, the unwavering dedication to the interests of the patients and families throughout California that he represented, his genuineness, his affable nature.

On our first meeting, Fred shared with me, almost in passing, in a very matter of fact manner, something about his personal challenge, but that was the last time he ever spoke about himself. In all our subsequent chats, his only questions were about CIRM, about how the restructuring would strengthen our mission and broaden our promise to the people of this great state. At Fred's funeral, the rabbi defined Fred as a consummate practitioner of tikkun olam, the ancient imperative of repairing and improving the world. Speaker after speaker made ineluctably clear Fred was on a mission his entire life to improve the world. He was the dynamo and the shining center of so many constellations, his loving family, the ALS community of patients, caregivers, research scientists and clinicians, and, of course, the universe that is CIRM. He gave so much of himself that each of these groups probably thought they had exclusive rights to him. For each he strove to repair and improve the world, to offer support to ease the burden.

For his wife, for his children, for the Golden West and other ALS chapters in California, for CIRM, and for the thousands of people whose lives he touched. Directly or indirectly, and whether they had the fortune to know him or not, he 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 was appointed as a CIRM Patient Advocate shortly after I joined the staff, and I attended his orientation with the Review Team. He gave a casual shrug now and then, with the occasional eye roll-self-deprecation plus confidence in an endearing mix. Over the next three years, Fred proved to be one of the most insightful yet modest patient advocates in our reviews. Always candid about his non-scientist perspective, he nonetheless contributed meaningfully across topics. His approach to advocacy work for CIRM was consistently rigorous, particularly in applying his deep experience from ALS Golden West and evaluating diversity, equity, and inclusion in grant proposals. In meetings, Fred's incisive questions were always followed by his signature shrug.

I have two favorite memories of Fred. In one review, he used his platform to remind us of the value of the patient perspective, delivering an impromptu tribute to a fellow GWG Board Member who got involved after receiving an experimental therapy for spinal cord injury. On another occasion, he closed 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

[Link]^{From left to right, Lana Moralez, Claudette Mandac, Fred Fisher, and Scott Tocher. Image by Lana Moralez}

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 had so much trouble writing this because it meant really acknowledging he's gone, but then I ran across this 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 am thankful he'll be immortalized in transcripts and recordings for us to help remember him. I have so many memories of Fred that're too hard to write about right now, so instead I'll write about the qualities I will always remember when I think of him:

• Fastidious and fearless - He was incredibly attentive to everything, whether it was reviewing grants and making sure everything was clear and complete to always making sure he promptly responded to everything lobbed his way. He was fearless about asking questions, pointing out discrepancies, and underscoring the importance of processes and the promise CIRM made to the state of California to get the propositions passed.

• Respectful - He was respectful of the work CIRM staff produced, always making sure to give credit to the staff's hard work and diligence. He was incredible respectful of everyone's time, always making sure we got to what we needed to get to so people could carry on and forward.

• Even-handed and ethical - In every meeting and interaction, he treated everyone and everything the same. He was fair.

• Dedicated and dependable - He showed up to every meeting he could, prepared, engaged and attentive to discussion. He took his role at CIRM very seriously, and we could always rely on him to show up, speak up, and help guide us in the right direction.

Fred, I miss you, I am grateful to you, and I will remember you.

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