Patient Advocate Extraordinaire

Patient Advocate Extraordinaire

Gail Segal admits to hounding people when her son was diagnosed with a brain tumor back in 1975. She wasn’t shy. She called the National Cancer Institute, the American Cancer Society, among other places, trying to get more information.

“They all told me there was no information and no options,” she says. “Since no one was answering my questions, I determined to find the answers on my own.”

That initial list of questions became the basis for the American Brain Tumor Association’s first patient pamphlet, “A Primer of Brain Tumors,” painstakingly researched and written by Segal. “For many years, I dedicated myself to expanding the patient services program of ABTA because in doing so, I was determined to ease the way for others sharing my journey,” Segal says.

That brochure was intended to answer questions like “what do I do when my child goes back to school?” or “what to expect when your child is dying?” She went to the newly-formed ABTA and they agreed to print the pamphlet to help patients understand what brain tumors were and how they were being treated at that time.

She is forever grateful to one of the ABTA founders – Susan Netchin Kramer – for laboring in the trenches during those early days of no information or misinformation. “At that time, doctors were pretty paternalistic and discouraged independent fact-finding or told me that I wouldn’t be able to understand the technical information.”

Remember that back in 1975, you couldn’t go online and Google Web MD if you wanted to learn something about a diagnosis you had just received. Social media did not exist. Today, the association has an online brochure – About Brain Tumors: A Primer for Patients and Caregivers” — that aptly gives credit to Segal for her original publication.

Today’s primer includes information on clinical trials and patient rights; extensive information about side effects such as seizures, and a section on children going back to school, still as relevant as it was in 1975.

One of the realities back at that time period, Segal says, was that doctors were referring brain tumor patients to their local, community hospitals for treatment. “It was tragic,” she says. “One of the things we focused on in those early days was getting people to centers of excellence,” where there were experts in the field. The association compiled a list of those centers based on their experience, credentials and other criteria. She says that was one of the most significant accomplishments in the beginning years.

Because of her quest for knowledge, Segal actually attended two years of nursing school in order to help others but also to help herself attain credibility in her work with the association. While family needs became a priority after two years of school, in another time she might have considered medical school. The association became her life, as it did for her husband, Don, who served as executive director for several years and was board president.

Her son survived and is now an engineer. He experienced another brain tumor recently, attributed to the radiation he received as a child.

Segal’s determination to always move forward to improve what is even today considered a very dire diagnosis, causes her to feel somewhat regretful that they weren’t able to accomplish more in a faster manner during those early days. “We were so slow and took some missteps,” she adds. “It was frustrating.” Yet she feels tremendous hope for the future not only in ABTA leadership but in advances in treatment and research.

The diagnosis of her son, which led to her involvement, mirrors the way many people get involved in ABTA. “It’s only when you have a personal connection that you get involved. It is never random.”

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