Lincolnshire couple reflect on 50 years of fighting for brain tumor cure

When Susan and Manny Kramer's 4-year-old daughter, Stephanie, was diagnosed with a brain tumor in 1972, the news was even more devastating because there were so few answers available to their long list of questions.

The medical specialty of neuro-oncology hadn't been established. There was limited research funding. The CT scan was new, and the MRI didn't yet exist. And there was no resource to provide patient education and support.

The couple's search for information led them to people and places, such as the doctors doing some of the country's only brain tumor research at University of California in San Francisco, and others less helpful, such as a psychic healer in The Philippines.

Along the way they met other people in the same situation as them, searching for what to do to help a loved one diagnosed with a brain tumor. In 1973, Susan Kramer and Linda Goldstein, another parent whose child had been diagnosed, founded the American Brain Tumor Association, the first national nonprofit dedicated to brain tumor research and education.

“I had started thinking, 'you know what, there has to be something we can do here,'” Susan Kramer recalled at the couple's Lincolnshire home. “We can't just sit around here and wait for the ax to fall. That's when I got the idea that we should start looking for a cure.”

Stephanie Kramer died around two years after her diagnosis just as she was to start second grade. Goldstein's daughter, Micki Rae Shanoff, died in 1973 a few months before the association's first meeting.

In the 50 years since, the association has grown from an all-volunteer outfit run out of a basement into a professional organization, which has raised and given out more than $34 million to brain tumor researchers and provides information about brain tumor diagnoses in layman's terms to hundreds of thousands of people searching for answers.

In the early days, a reliable way to raise funds was for volunteers to carry big cans and spend long days outside asking passers-by to spare some change. Manny Kramer was a developer at the time and would take cans to worksites.

“I did canning out in front of my own buildings because I knew the guys working there wouldn't say no to me,” he said with a laugh.

Susan Kramer said early on doctors in the field of brain tumor research advised one of the best ways to make an impact would be to fund early researchers.

“We weren't raising billions of dollars,” Kramer said. “But this way, we could give a grant of $40,000 to $60,000 over a period of time for people who were beginning research … Then they could go to the NIH (National Institutes of Health) or the other places where you could get significant money.”

Among the most notable researchers whose early work the association helped fund is Dr. Mitchel S. Berger, who now serves as professor of neurological surgery and the director of the Brain Tumor Center at the University of California, San Francisco. Berger pioneered the practice of keeping patients awake during brain surgery, which decreases the risk of harming healthy brain tissue while removing tumors.

Berger has consulted on high-profile brain tumor cases including President Joe Biden's late son, Beau, and is a member on the National Cancer Institute's Cancer Moonshot blue ribbon panel.

“If I hadn't gotten funding early on from the ABTA, I would not be where I am today,” Berger said. “And I would say, unequivocally, I could name 10, 20, even 30 investigators who received ABTA funding and are now established leaders driving change in treatment and care.”

Besides raising money to fund research, the Kramers began creating a primer they could provide at no cost to people struggling to learn about brain tumors.

“Try to visualize, you're scared to death, you've got a sick kid and somebody's giving you this dissertation in words you've never heard before,” Manny Kramer said of the primer. “This puts it in plain English.”

The Kramers went to great lengths to ensure all of the information they gathered came from reputable sources. When going through an old ABTA office, a copy of the original 1977 primer was found along with hand-drawn diagrams of the brain and letters the association had received from leading brain tumor experts commending them on the document.

Over the years, the primer was updated with the latest medical guidance and adapted into brochures that doctors could hand out to patients. Now at abta.org, the association provides not just information for patients but also connects people to a network of support services.

“When I talk to patients … over and over I hear again about how important it was for them to feel that sense of community, to not feel alone in this battle and to know there was information available to them,” said Kelly Sitkin, ABTA chief development officer.

At their Scottsdale home earlier this year, the Kramers hosted the launch of the association's latest fundraising campaign, “Meet Hope Head On,” which aims to raise $50 million over five years.

“We're not satisfied with the progress we've made against the diseases that cause brain tumors,” said ABTA President and CEO Ralph DeVitto of the initiative. “Susan's reaching out to make people aware that while what she started in 1973 has done a lot of good for a lot of people, it's not good enough.”

Goldstein, who died in 2020, decided to reduce her involvement with ABTA after a few years but Susan Kramer said they decided to keep going and keep the association going.

"At that point I felt it was sort of in Stephanie's memory and I felt we had started something that was important,” Susan Kramer said. “That we could be of some help to other people.”