For about half an hour, Marguerite Casillas broke the spell cast by speakers discussing transcription factors, recombinant DNA, and other scientific breakthroughs.  

She reminded an audience of undergraduate, graduate, and postdoctoral scientists at a California Institute for Regenerative Medicine (CIRM) trainee networking conference what their work is ultimately about.  

“Behind every sample, every data point is a person waiting for a breakthrough,” Casillas told them. “We’re lucky we have CIRM in California and are investing in this kind of science.” 

Casillas brings the same message to her role as a patient advocate on CIRM’s Independent Citizens’ Oversight Committee. She tells scientists to include patients — the people who are experts in their own conditions — in the research meant to help them. She urged the trainees not only to stay focused on developing gene and cell therapies, but to involve patients meaningfully throughout the process. 

“Your science will be stronger for it,” she said. 

Why the patient’s perspective 

Diagnosed with MS in 2003, Casillas knows how essential patient insight can be. Diseases like MS, Parkinson’s, and cancer are often labeled singular, yet they appear differently in each person. Patient experiences help researchers understand how diseases begin, progress, and respond to treatment.

When designing a clinical trial or a therapy, researchers consider what patients and families value in daily life. These experiences guide the design and delivery of research and trials so they feel more tailored to people living with these conditions.

“Marguerite has been a tireless advocate for ensuring that patient perspectives are reflected in research decisions,” said Michelle Johnston, Director, Advocacy & Policy for the National MS Society in California. “Her leadership has helped keep the focus on accelerating treatments and cures that can improve the lives of people living with MS.” 

Casillas reviewed one MS study that asked participants to complete a 90‑minute interview, even though fatigue is common in MS. Patient feedback pushed researchers to divide the interview into shorter sessions, making the study much more accessible.

A journey into advocacy 

Casillas’ MS journey began when she woke up with a large dark smudge in her left eye. Within three months, doctors diagnosed her with MS.

She said she felt alone and vulnerable, as many newly diagnosed patients do.

In a San Francisco Chronicle opinion piece, she described her fears about the diagnosis and its aftermath.

“What if MS, a disease that attacks the central nervous system and can leave someone severely disabled, took all of that away from me? I remember crying on the Richmond BART line on my way home from the doctor that day.” 

Despite fears about how MS could change her life, Casillas continued her corporate career for 18 more years. She retired in 2022 as senior vice president for corporate communications at Wells Fargo. She says advances in MS treatments, driven by research, helped her stay in the workforce.

The experience taught her a lot. 

“(I was) worried about what I’d lose,” Casillas said. “What I didn’t know was all that I’d gain: a new appreciation for science, a new purpose as an advocate and eventually a seat at the table helping shape research itself.” 

Over time, she became more involved in research. She joined several MS clinical trials and studies. One Phase 2 trial examined COVID‑19 vaccine safety and effectiveness in people with MS. Because of her family’s history with Parkinson’s disease, she also joined a PD study with the Michael J. Fox Foundation. She contributed to national efforts, including the NIH’s All of Us initiative. She often jokes that she is “donating her body to science while I’m still alive.”

She also arranged to donate her brain and spine to research after she passes away.

A voice for patients 

Since her retirement, Casillas has expanded her advocacy on both state and national levels. She’s partnering with the National Multiple Sclerosis Society, the American Association of People with Disabilities, and other organizations. She is a District and State Activist leader for the MS Society. In that role, she regularly meets with legislators to discuss issues affecting people with chronic illnesses and disabilities. She is also part of a patient-led initiative working to advance MS research. 

In 2025, her leadership and impact were recognized when the California Lieutenant Governor appointed her to CIRM’s board. She has also served on CIRM’s Scientific and Medical Research Funding Working Group. The working group evaluates the merit of grant proposals and makes recommendations to the full board. 

“I am so proud to be part of an organization that supports cutting-edge science to help improve the lives of Californians living with serious diseases,” she said. 

Looking ahead 

Casillas earned a master’s degree in Disability Studies from the City University of New York. The program centers on a core principle of disability advocacy. It states: “Nothing about us without us.” The philosophy emphasizes giving people agency in shaping the research. That is especially for research that affects their lives. Casillas brings those values to CIRM every day. 

Her message to the trainees captured that belief clearly. She told them to listen to patients, involve them meaningfully, and stay grounded in why the science matters. 

“Living with MS means navigating challenges some may never see—managing tradeoffs between work and rest, independence and support, hope and fear,” she said. “I’m thankful that research has delivered medications and treatments that have helped me manage my MS very well for the last 22 years. But people are still being diagnosed with MS, their diseases are still progressing, and they are still becoming disabled. I want research to help people whose MS is more challenging and more unpredictable than mine. I want breakthroughs for them.”