Gale Scott

The ultimate goal of the American Brain Tumor Association (ABTA) is to save lives through funding research.

ABTA, a Chicago-based national nonprofit formed in 1973, also wants to inform patients who get a brain tumor diagnosis — and the people who care for them &mdash; about treatment and options. The organization conducts seminars, provides publications, hosts webinars, offers educational programs and has professionals available to provide care consultations by phone or email. About half its funding comes from contributions, gifts and grants and about half from fundraising events, like golf outings and galas.

To learn more about ABTA and its goals, CURE spoke with Elizabeth Wilson, the organization’s president and chief executive.

The ABTA is the first and only national brain tumor volunteer organization for patient and caregiver support. We have 28 employees and a $5.5 million budget and we are in Chicago.

In the early 1970s, when the ABTA was founded, there were no patient-friendly materials to explain brain tumors, no coordination of research, and no way to track the prevalence of brain tumors. Things have changed.

In addition to creating a patient registry, including a registry for patients aged 15 to 39, we have worked with nurse organizations to create clinical guidelines for treating adults and pediatric patients. We have also fostered an alumni network where we bring researchers together for a weekend every year. These researchers meet each other, and that results in collaborations. Over the last three years we have seen at least 60 organizations collaborate. It’s been so successful that we have gotten a research grant to fund this type of collaborative research.

Is there anything interesting on the horizon in the field of brain tumor research?

Our alumni network has been so successful that we have gotten a research grant to fund this type of collaborative research between institutions.

Our challenge is to do more, faster. There have been lots of advances in treatment, but the brain is complex, and because of the brain/blood barrier it is difficult to research.

Another challenge is that the population of people with brain tumors is relatively small, compared to other cancers.

What do brain tumor patients have in common?

Brain tumor patients experience fear and isolation. We try to mitigate the fear and empower patients with knowledge.

What kind of difficulties do you face regarding to patient education?

The challenge is getting in contact with patients at the point of diagnosis, while they still have many choices to make. We often hear patients say “I wish I had known this when I was diagnosed,” before they make decisions on treatment. We are building a grassroots volunteer network to reach patients closer to when they are diagnosed.

 I like the mission and challenges, the ABTA’s history and legacy, and being at the center of the brain tumor ecosystem.

What have you achieved in funding research?

We’ve spent $30 million over the past 40 years, money awarded to 700 researchers. A lot were early career scientists. We have helped them stay in the field and go on to be scientists running their own research labs.

We are looking for research to eradicate brain tumors, but the research we fund does not necessarily lead directly to cures.

We do want discovery science, too, and our funding has led to two new drugs for glioblastoma multiforme (GBM) that are in development and the creation of a new biotech company; the $2 million we provided led to another $11 million in funding.

What does the big picture look like for brain tumor research and treatment?

Research has changed treatment dramatically. When I took this job it was just surgery, radiation and chemo.

But the big story that changed is the advent of precision medicine. There has been tremendous activity there-- more treatments that can control tumor growth. Brain tumors are becoming more like a chronic condition.

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ABTA: Saving Lives Through Funding Research

It has been decades since Wanda Diak learned she had ovarian cancer. She was treated and survived.

That fact in itself — let alone her management and people skills &mdash; made her uniquely qualified for the job she has now held for 20 years, director of the Cancer Hope Network, a nonprofit in Chester, N.J., that connects cancer patients and caregivers with volunteers who have “been there.”

“Like everyone else, all I had heard about it were horror stories,” Diak said of her illness. “Then I talked to someone who had been through it and I was given hope.”

That simple concept of matching cancer patients with former patients, an idea that came from an oncology nurse, turned into a project of the Junior League of Elizabeth-Plainfield, N.J. Then the Cancer Hope Network became a formal organization and has grown steadily over the past 35 years, Diak said.

The network expanded both in scope — the organization also matches caregivers with volunteers &mdash; and in numbers.

“When I started it was 14 to 17 matches a year,” Diak said. “Now we are matching about 2,000.”

The nurse who started it all, Diane Paul, began by enlisting other nurses, clergy and lay people as volunteers.

“She said she saw so many people giving up because they saw the diagnosis as the end,” Diak said.

But by pairing patients with survivors, the patients learned how to get through treatments, what to expect, how to handle situations that might arise and that they had a future to look forward to.

The idea was so successful that the organization has grown into a $2.5 million enterprise and now has about 450 volunteers. Cancer Hope Network went national in 1981 and got its nonprofit designation from the IRS as a 501(c)(3) charity.

The group’s biggest expense comes in making appropriate matches, a task that involves phone interviews, collecting detailed information and using software designed to link patients with volunteers who can best help.

While fundraising events include golf outings and a gala, the organization also relies on private donations.

While the network has a full-time staff of only four people who work out of a small condominium, the hundreds of volunteers are trained to handle phone calls.

“They learn policies and procedures, the do’s and don’ts of talking to patients and they do some role-playing,” Diak said of the training.

They also learn how to set boundaries. If it becomes clear a caller needs more support than the volunteer can give, they learn how to make referrals to support groups, social workers, the patient’s care team or other appropriate resources.

“We never ask our volunteers to speak about anything other than their own experience,” Diak said. That includes a rule that volunteers will not offer medical advice or treatment recommendations.

Volunteers say they get satisfaction out of their work.

One such volunteer, Rita B., survived cancer of the larynx 22 years ago. She has not let the fact that she uses an electronic voice device stop her, she said.

“I am living a normal life,” she said, a message that she likes to impart to others facing that illness.

For Charlie T., who survived a bout with lung cancer four years ago, joining a support group sustained him through some difficult times. He learned the power of talking to others, he said.

“Once I was out of the woods, I thought I might like to do this,” he said of his volunteer work. “We don’t often have a chance to give something back.”

A third volunteer, Kathy M., survived small cell lung cancer nine years ago. It is generally a condition with a dire prognosis, she said. “I’m still living, and I like giving hope to other people.”

The best advice the volunteers said they give the people with whom they are matched, is not to look up their illness online because they will likely see things that will upset them.

The most common and gratifying reaction newly diagnosed people have when they first speak to their matched volunteer is the surprise — the “wow” factor, Diak said.

“They are so relieved to hear that someone got the same diagnosis they did and that they lived through it and are still here. That makes a major difference in how they see their own future,” Diak said.

The Cancer Hope Network realized that connecting a patient with a person who has been through the same diagnosis and struggles as them could be extremely helpful. 

Cancer Hope Network: Connecting Patients With People Who Have "Been There"

Emily Wilkinson, an eight-year-old from Iowa, was in a hospital recovering from an emergency appendectomy.

Doctors had diagnosed her appendicitis only after the pain became unbearable — weeks after she had been through tests for infections and bowel disease. It was an ordeal.

Fortunately, she came through the appendix surgery, but that was only the beginning of her story.

In an account on the Carcinoid Cancer Foundation (CCF) website, her mother, Kristi, picks up the tale from there, describing her memory of walking down a hospital hallway to meet with her daughter’s surgeon: “I was blind to the fact that Emily was placed on the oncology floor, that we were surrounded by children who all are suffering from cancer,” she wrote. “The walk to the conference room was like something from a nightmare. The hallway, like a tunnel, and everything, slow motion. As we walked I looked into the rooms we passed. I realized that every child either had no hair, feeding tubes, looked fragile and ill. They were all cancer patients. I hadn’t noticed this before now? How?”

During the appendix surgery, doctors discovered that Kristi’s daughter had a rare tumor. It was a cancer of the gastrointestinal tract known as a carcinoid cancer. The fact that it had taken Emily’s doctors weeks to discover and name the cancer did not surprise anyone at the CCF, a non-profit advocacy group in White Plains, New York.

The group’s favorite saying is “sometimes hearing hoof beats should make people think of zebras, not horses.”

“The zebra is our symbol,” said Grace Goldstein, the organization’s chief operating officer. “Common symptoms don’t always mean common diseases.”

Carcinoid cancer makes up more than 40 percent of all small intestinal malignant tumors. They can occur anywhere in the gastrointestinal tract and pancreas, though they are sometimes found in the lungs and elsewhere. About 12,000 cases are diagnosed each year in the US. When the tumors metastasize they can cause carcinoid syndrome, where tumors secret excessive levels of multiple hormones. That can cause symptoms including flushing, diarrhea, wheezing and heart failure.

Because those symptoms are also found in other ailments, carcinoid cancer is frequently misdiagnosed, said Goldstein, who joined the organization 13 years ago. For example, if a patient has diarrhea a physician may think it is Chrohn’s Disease, or irritable bowel syndrome.

“If it’s a man that might get misdiagnosed as rosacea and if it’s a woman anywhere near menopause, she might be told its menopause,” Goldstein said.

Part of the problem is that not only have most patients never heard of carcinoid cancer, but many physicians are not familiar with it either. CCF’s mission is to help people better familiarize themselves with carcinoid cancer.

The organization uses its website to post patients’ stories and information on the latest treatments and research. CCF also uses social media to help these patients connect with others and even find places where they can get help.

The organization is small, with both their expenses and revenue coming in under $1 million, including donations from pharmaceutical companies.

“We don’t have fundraisers but sometimes people do them for us,” Goldstein said.

Goldstein, one of the few employees, works from a home office but makes the most of the small staff by relying on the website and social media to meet the foundation’s goals.

A few years ago, Goldstein learned the true power of social media.

When a blizzard shut down London’s Heathrow Airport a few years ago, she knew of a patient who traveled to the UK from Canada for treatment was stranded in the airport, trying to return home.

“I Tweeted that a cancer patient was stuck in Heathrow and needed help, please,” she said, mentioning Heathrow airport's Twitter account. Somehow the airport was able to arrange for the woman to get on a flight home, even though thousands of other travelers spent the night in Heathrow.

But besides helping people figure out their travels, the CCF site mainly serves as a support group where patients tell how they came to be diagnosed, what treatment has been like, and where others might try to find the best care. For instance, state-of-the-art diagnosis is available with a Gallium-68 scan, Goldstein said.

“There are only 10 places in the U.S. that have them and there is a map of them on our site.”

Other patients have told stories of paths that took them to the Mount Sinai Hospital offices of Richard Dr. R.P. Warner, the foundation’s medical director and expert on carcinoid cancer.

Emily’s mother found a specialist in Iowa who worked at a hospital with a Gallium-68. Based on findings in those scans Emily got further surgery but is doing well, her mother reported on the website. The girl will need regular blood tests for 10 years. The tumors, while slow growing, could come back. That often happens with carcinoid cancer.

“I believe that my Emily is an exception,” her mother wrote, “that we caught her cancer right at the perfect time and that this surgery has taken care of all of it for good!”

The CCF website played an important role in helping her find peace of mind, she added. The information and support she found there “helped my family through one of the worst things we have ever had to deal with.”

Gale Scott

ABTA: Saving Lives Through Funding Research

Cancer Hope Network: Connecting Patients With People Who Have "Been There"

Carcinoid Cancer Foundation: Spreading the Word About an Often Overlooked Disease

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