JAX remembers Cindy Johnson

As with all great discoveries, Cindy and Edwin Johnson learned about The Jackson Laboratory by asking questions. 

Their introduction to JAX was through Cindy’s nephew, a microbiologist who attended a postdoctoral seminar at the Laboratory in the early 1990s and was fascinated by the then-novel idea that genetic diseases could have genetic solutions.

When the couple gave Cindy’s nephew a ride from the Bar Harbor campus during one of their summer visits to Maine, they were intrigued by his enthusiasm. This led them to ask questions about JAX’s research and start attending Laboratory events, including Forum for Discovery, a signature summer program that highlights the institution’s world-class scientists. 

Then, on a kayak trip in 1991, the Johnsons noticed a new home being constructed on the shores of Blue Hill Bay. It eventually became their family summer home, and their connection to JAX kicked into a new gear.  

Together, Cindy and Ed transformed philanthropy at JAX. Ed served on the Laboratory’s Board of Trustees from 1996-2006 and chaired its Development Committee. Known as an inveterate salesman and convener of like minds, he was instrumental in recruiting board members into service. According to JAX’s records, he and Cindy introduced 193 new people and organizations to JAX, including three Trustees, and raised more than $5 million in gifts from their extensive network. Ed also launched the Society for Discovery, JAX’s planned giving society that exists to this day.

They helped develop a comprehensive fundraising strategy and established formal planned giving programs. They gave generously of their time and resources to help advance the Laboratory’s commitment to human health with gifts that supported cancer research, educational initiatives, leadership development and more.

Cindy passed away in May at 93, surviving Ed by 12 years. Both lived full lives, and JAX is grateful to be part of their legacies.

“Cindy and Ed were very gracious people,” said Renee LaCasse, a longtime JAX employee who knew the Johnsons for many years. “Cindy had such a long, dedicated commitment to JAX, yet it was understated and selfless. They made us feel that fundraising for the Laboratory was an important, higher calling.”

Facing cancer with grace and grit

At age 40, cancer forced doctors to amputate Cindy’s left leg. She used crutches from that point on, but never let the amputation hinder her. At her memorial service, her children, Tom Johnson and Becky Kerchner, remembered visiting their mom after the surgery to remove her leg.

“She was sitting up in the hospital bed, pretty and smiling, and she greeted us with her usual warmth and love,” they said. “That was it. Looking back on this, she not only bore her loss with courage, but she absorbed our fears too. In that moment, she set the tone for how it was to be going forward, and it never changed.”

Years later, when Ed was diagnosed with prostate cancer, his JAX connections led to a spot in clinical trials at Memorial Sloan Kettering Cancer Center, where his oncologist, Dr. Susan Slovin, hoped novel treatments might give him 10 more years. He defied all expectations by living 22 years longer.

He jokingly referred to himself as a guinea pig during that time. “It won’t help me,” he used to say, referring to the treatments that gave him time but would never cure him, “but it’s going to help someone else.”

Coming into her own

After Ed passed in 2012, Cindy enjoyed a new level of involvement with JAX. She forged new connections and directed much of her philanthropic support to the Edison T. Liu Endowed Chair in Cancer Research and the Charles E. Hewitt, Ph.D., Leadership Excellence Endowment, which supports leadership development programming for JAX’s non-scientific leaders.

Cindy was a quiet but persuasive leader in her life outside of JAX as well. Within her retirement community, she continued her philanthropic efforts as a board member of the community’s foundation and raised funds for several enrichment programs, including funding for residents who had exhausted their financial resources. She served on several committees, ran efficient meetings and had a way of making sure everyone felt their contributions were valued.

“She was always looking forward and positive about life until the end,” Tom said. “She was gracious and resilient. But she was also tough and strong.”

This article is part of JAX’s 2024 digital impact report, an annual celebration of the power of philanthropy in accelerating our mission to improve the future of human health.