Honoring Karen Petrou: A Visionary Leader and Champion for the Community

The Foundation Fighting Blindness community mourns the loss of Karen Petrou, our Board Chair, who passed away after a private battle with liver cancer. Throughout her many years of service to the Foundation, Karen was an extraordinary force for progress, advocacy, and hope for everyone affected by inherited retinal diseases.

Of all the roles Karen held in her distinguished career, from co-founding a prominent financial services firm to advising Congress and international institutions, it was serving as Board Chair of the Foundation Fighting Blindness that she cherished most. Karen often said it was the highest honor of her life, a joy and privilege that gave her profound purpose. For those of us who had the honor of working alongside her, we know that the privilege was entirely ours.

Karen's journey with the Foundation began where so many of our stories do—with a diagnosis. At 18, she was told she had retinitis pigmentosa and would be completely blind by 25. The prognosis proved devastatingly wrong. Karen didn’t lose her ability to read until her thirties and didn’t require a guide dog until she was in her 50s—testament to how little was understood about the natural progression of inherited retinal diseases at that time. Rather than let this define her limitations, Karen went on to build a remarkable career as co-founder and managing partner of Federal Financial Analytics, becoming a prominent voice in financial services policy, testifying before Congress, and advising institutions from the Federal Reserve to the International Monetary Fund and many other governmental, industry, and academic groups. Like many people experiencing progressive vision loss, early on she was coping the best she could and trying to hide her vision issues. But as she once reflected, the experience of having people doubt her capabilities—both because of her vision impairment and the sexist attitudes she encountered in business—became “good combat training” that strengthened her resolve. It was her mother's gentle persistence and a chance neighborhood connection with longtime Foundation director Moira Shea in the early 2000s that brought Karen and her late husband Basil fully into the Foundation fold. They attended VISIONS conferences and trustee meetings, impressed by what they saw. As Karen's retinal disease progressed, their conviction grew that the Foundation represented the best path forward for advancing treatments and cures. What began with engagement and generous philanthropy evolved into Karen joining the National Trustees in 2004, and as a Board Director in 2008.

Karen became Board Chair on July 1, 2024, making history as the first female Board Chair in the Foundation's more than 50-year history. She stepped into this role at a pivotal moment, as the Foundation entered what she and CEO Jason Menzo called "FFB 3.0"—a new era building on the foundational work of co-founders Ben Berman and the transformative leadership of Gordon Gund. Karen had been preparing for this role as Executive Vice Chair since July 2023, working closely with retiring Board Chair David Brint, the Board of Directors, and the Foundation's executive team. She expressed deep honor at stepping into the role and excitement about building on the incredible progress made under David's leadership to accelerate the development of treatments and cures. What impressed Karen most about the Foundation was its disciplined approach to research. The expert science advisors directing all investments and the Foundation's leadership in exploring innovative ways to fund biomedical research. Under her leadership, the Foundation achieved critical milestones that will shape research and patient care for years to come.

Karen championed the Board's approval of a five-year science strategic plan that dramatically broadened the Foundation's research focus. This included a commitment to late-stage vision restoration research, personally meaningful to Karen and critically important to thousands living with advanced vision loss. As scientific advances demonstrated the possibility of restoring vision even for people who had lost significant sight, Karen was determined that the Foundation would invest in making it happen. She was passionate about ensuring that research and clinical trials reflected the full diversity of the IRD community, pushing for more inclusive genetic research across different ethnic backgrounds and emphasizing the importance of diverse representation in clinical trials across gender, age, and ethnicity.

Perhaps no initiative better exemplifies Karen's strategic vision than BioBonds—H.R. 3437, the Long-term Opportunities for Advancing New Studies (LOANS) for Biomedical Research Act. Working with Basil, Karen helped conceive and champion this bipartisan legislation designed to accelerate treatments and cures through creative federal loan guarantees for biomedical research. The bill represented her deep understanding that “there's more science out there than there is money to fund it,” and her determination to solve that challenge through financial innovation and policy change. It took years of late-night financial modeling and financial engineering, as Karen called it, to make the concept practical, but their persistence has the potential to advance many more treatments and cures, including those for eye and retinal conditions.

Karen never forgot what it felt like to receive a frightening diagnosis from well-meaning but often ill-informed ophthalmologists. She and Basil even funded research to study how doctors delivered IRD diagnoses. The results deeply troubled them. This experience fueled her commitment to improving patient care and ensuring newly diagnosed individuals found connection and hope through the Foundation community. Her message to anyone affected by vision loss was consistent and powerful: engage, connect, and don't fear. She spoke often about people with vision loss contributing in the Foundation's work, in their daily lives, in schools and professions in truly successful and important ways with meaningful private lives. Her own life stood as testament to this truth.

Karen often noted the poignancy of vision—both literal and metaphorical—in the work of the Foundation. “Some of us don't have an awful lot of sight, but we have a lot of vision,” she said. “And I think we can realize it. I truly do.” That vision included transparency and accountability to the community, ensuring donors and stakeholders understood how their contributions were being used. She was unwavering in her belief that funds raised through the Foundation went to science, and were stewarded to maximize efficiency. It meant closer connections between Foundation staff and local communities. It recognized that the Foundation's work extended beyond funding research to supporting people through the anxious and distressing experience of vision loss. She had an unwavering belief that treatments and cures were not just possible but imminent.

In one of her recent public appearances, Karen reflected on the Foundation's evolution and her hopes for its future. She spoke about the importance of staying up-to-date on research, engaging with the community, and maintaining the momentum toward treatments and cures. She believed that everyone in the community had a right to understand not just what the Foundation was doing, but how it was using every dollar contributed and raised. Her leadership philosophy was grounded in inclusion, innovation, and the fundamental belief that the Foundation's mission belonged to everyone it serves. She worked tirelessly to ensure that all voices were heard, all forms of IRD were represented in research priorities, and all stages of disease received attention and resources.

Karen's commitment to helping others extended beyond research advocacy. Karen and Basil’s partnership began through their professional work. Housing finance brought them together when a mutual client needed expertise in both banking and housing policy. After Basil's death in 2021 following a heroic battle with pancreatic cancer, Karen understood firsthand how daunting the financial and legal implications of losing a spouse could be. This experience inspired her to help create the Basil and Karen Petrou Legacy Education Initiative, born of the Foundation's commitment to helping individuals ensure their estates do the best they can for their loved ones and the causes they care about. Through dynamic content, seminars at VISIONS conferences, and online resources, Karen hoped that her and Basil's belief in the Foundation would inspire others to support the work and possibly leave their own legacy. Karen also served on the board of the Fidelco Guide Dog Foundation, demonstrating her dedication to causes supporting people with vision loss.

Leading the Foundation while navigating significant vision loss herself required extraordinary courage. The kind of courage that comes from the heart. Every interaction with Karen revealed this profound strength of character: the intention, determination, and grace required to chair board meetings, guide strategic decisions, and champion a global mission while experiencing the very condition the Foundation works to cure. Her courage in the face of her own vision loss inspired countless others. Her strategic brilliance helped chart a course toward a future with treatments and cures. Her compassion ensured that no one walking the path of vision loss would feel alone or without hope. The Foundation Fighting Blindness community will forever be grateful for her service, her wisdom, and her commitment to our shared mission. She touched countless lives, and her legacy will endure in every treatment funded, every cure discovered, and every person who finds hope through the Foundation she helped build.

The Foundation Fighting Blindness extends our deepest condolences to Karen’s brother, Stephen Dolmatch, and all of Karen's loved ones, and holds them in our thoughts during this profound loss.