Finding connections among those affected by rare NET cancers

This guest post was written by Christine Little, Co-Captain of the Zebra Divas team in the Boston Marathon® Jimmy Fund Walk presented by Hyundai. Christine shares the story of her sister, Liz Acaba, who was treated for a neuroendocrine tumor at Dana-Farber Cancer Institute before passing away in 2019. She was the inspiration for the Zebra Divas and her memory lives on with each step they take. This story has been edited for style and clarity.

“Hope is not what you have. Hope is something you do” – Frank Burns

Liz was a doer. Passively hoping that a cure would be found for NET was never going to be an option for her. 

In the winter of 2014, a few years into her battle with a neuroendocrine tumor, Liz Acaba made the bold decision to walk in the Boston Marathon® Jimmy Fund Walk. Liz created the Zebra Divas (the name invented by her son Josh). She then recruited a handful of members, had T-shirts printed, and committed to training her body. The first year, 10 members walked the full 26.2 miles. A goal not for the faint of heart, but Liz crushed it. The walk energized her fight. 

This first walk set the framework for the connections, relationships, and support that would sustain and nurture Liz as she walked head on into her battle with NET, which has no known cause, cure, or even a defined list of symptoms to expect. 

Ever the competitive athlete, Liz was going to give this disease its most formidable opponent.  She and her husband, Ralph, met with the doctors at Dana-Farber Cancer Institute, attended conferences, and researched high and low. She worked hard to keep her great level of physical fitness through Pilates, aerobics, biking, walking, and horseback riding. She also took on a holistic approach with acupuncture, massage, meditation, and reiki. Fueling this vibrant to-do list was her drive to have more time with the people she loved: her husband Ralph, her sons Josh and Lucas, and her many family and friends.

The Jimmy Fund Walk provided Liz with an active way to talk about NET cancer with others and to bring people who loved her along with her. Her mission was to raise money for research and awareness for faster diagnosis and a cure. Team members fly from the West Coast; drive from Connecticut, New York, and New Jersey; and some walk virtually. Many others are in the Boston area and have a long-time awareness of the important work the Jimmy Fund does. Each year more members join in, numbering as high as 40, and every year the amount of money we raise continues to grow. Since 2014, the Zebra Divas have raised $180,000 specifically for NET cancer research and treatment.

In our third year we met Harry Proudfoot from the NET Walkers Alliance while we were on the walk. We saw his team with their zebra print flags and we knew that we needed to meet them. Zebra print is the symbol for rare diseases, so seeing our team symbol walking with another group brought joy to us. We exchanged information and Liz and Harry continued to stay in touch. The walk also connected Liz to John O’Hara and the O’Hara family of the Shuffle for Dana-Farber team.

Liz’s “love language” of gift giving and caregiving made her a fabulous leader for a fundraising team. She created a joyous celebration the day before and the day of the walk. We had a zebra-themed cake every year, which was such a highlight for Liz, and we always toasted with champagne the accomplishments of the Zebra Divas. Liz kept in touch with the members all year long and expressed her gratitude in so many ways.

The last Walk of Liz’s life was in 2019. The shock and pain of trying to keep the walk going without Liz has been a challenge for all of us. One of Liz’s many talents was making hard things look easy. Trying to keep her dream of a cure for NET going has taken a whole village of people to fill her shoes. Ralph creates a spreadsheet of tasks delegated among many people eager to be part of this amazing movement created by Liz. We have created a process to allow members to choose whether to walk a trail in Liz’s backyard in Groton or to go into Boston to walk the marathon course. We all then meet back at the Acaba’s house for our celebration of Liz and of love.

–Christine Little

Help support research and care by joining The Dana-Farber Campaign, our ambitious, multi-year fundraising effort to prevent, treat, and defy cancer. The Dana-Farber Campaign will accelerate the Institute’s strategic priorities by supporting revolutionary science, extraordinary care, and exceptional expertise. As a community, we have the power to create a more hopeful, cancer-free future—in Boston and around the world. Together, we can defy cancer at every turn. Learn more about The Dana-Farber Campaign and how you can get involved at DefyCancer.org.