In Memory of Mike McGowan: Advocate, Leader, Inspiration

We honor the life and legacy of Mike McGowan, a dedicated advocate for the albinism community and a co-founder of the Global Albinism Alliance. From his early volunteer work to leading national and international albinism organizations, Mike devoted decades to improving the lives of persons with albinism. This tribute reflects on his achievements, his unwavering spirit, and the inspiration he leaves for the global albinism community.

We are sad to share the news of the passing of Mike McGowan, a dedicated advocate for the albinism community, on November 24th, 2024. Mike was among the initiators of the Global Albinism Alliance. In 2020, he co-organized in Paris an exploratory meeting that marked the launch of our organization. Since then, he remained instrumental in the development of the Alliance, dedicating his energy, expertise, and over three decades of experience as a leader in the albinism community to serving our organization.

We would like to share a bit about Mike’s life and career to give all of you — those who knew him and those who did not — a sense of the qualities that made him so special to us. Mike faced the challenges of all people with albinism (PWAs), including low vision that designated him as being legally blind. He often said that coming from a family of seven children who filled their home with “non-stop action” and parents who encouraged them all to always do their best, gave him confidence that he could keep up with anyone despite the challenges of being a PWA.

When a high school teacher advised him that he might not be accepted at an academically rigorous college that Mike had applied to, Mike bristled at the suggestion that he could not compete with others who did not have a disability. He enjoyed relating how pleased he was to inform that teacher that he did, in fact, get accepted to that school.

Mike wanted everyone to know that just because he was a PWA, he was not to be underestimated. And, indeed, he proved to be right. Mike established a record of professional achievement in a 30 year career in court technology in Cook County Illinois, one of the largest court systems in the United States.

Not only did Mike enjoy this demanding position, but it was during this time that Mike’s service to the albinism community began. First he assumed a volunteer role in NOAH. Mike began as a local volunteer, then expanded his role nationally by serving as a NOAH board member. He went on to serve as board President and finally, after his retirement from the court system, he served as NOAH’s first Executive Director. He held this position for just over ten years, growing the organization in size and scope. In the past four years Mike was a pivotal figure in the development of the GAA.

He used his strategic and organizational skills to help keep us on track. His decades of experience working directly with PWAs, their families and communities always reminded us that while the progress of the broader albinism movement is essential, we can never lose sight of the day-to-day experiences of PWAs. And his deep compassion and commitment to improving the lives of persons with albinism all across the world served as an inspiration to all of us who had the privilege of knowing him. We will continue to be guided by his pure and courageous spirit.

We are honored that, per his wish, donations in Mike's memory will support the continued work of the Global Albinism Alliance.