Gistinfo

Tania – GCRF Emerges

Tania’s Story and the Emergence of GCRF
In 1998 Tania was a busy wife, grandmother and cardiology technician who went in for a routine procedure to remove an ovarian mass. The surgeon instead found a tumor on her small intestine. When the doctor said it was cancer, Tania’s husband, Robert, reacted with disbelief. “I even made the doctor repeat it, recalls Robert. Actually, says Tania, six times. Six times, Robert agrees.

What Tania had was an extremely rare sarcoma known as gastrointestinal stromal tumor, or GIST for short. It is what the National Cancer Institute calls an orphan cancer because it affects a relative handful of patients, and little is known about it. It was so uncommon that it was often lumped with another sarcoma, leiomyosarcoma.

Tania did find out that GIST did not respond to chemotherapy or radiation treatment, that surgery was the only treatment, and GIST returned 90 percent of the time.
When Tania was diagnosed, people with GIST lived an average 10 to 14 months. Despite surgery, CT scans the following year showed Tania”s GIST was back, and had spread to her liver. She was told that she would not live more than a year, and was advised to go home and put her affairs in order. Tanias biggest fear wasnt dying, but that her grandchildren might forget her. She decided to find out for herself if what her local oncologist said was true, that nobody knew enough about her cancer to help her. She read whatever she could find, sought out sarcoma experts, looked on the Internet. One nationally recognized cancer center told her there was no hope, further reinforcing what now seemed a death sentence. Then Tania heard of a promising new drug being tested at a cancer center in Boston, but couldnt get on the clinical trial because the patient quota was filled. Tania, however, realized that there was hope for this disease, even if it excluded her.

Tania had to do something, and fast, because there was seemingly little time left. The promising drug shed heard about was in clinical trials at two other U.S. cancer centers, and Tania finally got on the trial in Philadelphia. Tania began taking the experimental drug in December 2000. As the drug was proving effective beyond anyones expectations, Tania knew that doctors, surgeons, oncologists and most importantly, patients, needed to be aware of what GIST was and where to find hope.

Though not her intention, she began building what clearly will be her legacy. Tania and Robert formed the GIST Cancer Research Fund, to raise awareness of GIST and raise money for GIST research. They also helped spearhead formation of an Internet support group and launched a Web site, www.gistinfo.org.

There is quote from Tania on the home page of the GIST Cancer Research Fund Web site: I am not a person in the public eye. I am only an average person. I am someones wife, mother, grandmother, facing a killer. I would like to do something, hoping that in the time I have left, something might be discovered that could help us beat this.

With a limitless determination to create GIST awareness, Tania started raising money by knocking on doors of neighbors, friends and relatives. So did Robert. Tania wrote to dozens of celebrities, hoping one would help drum up support, to no avail. They were turned down many times as people had never heard of GIST, but would not be discouraged. Even if they didnt get a donation, at least one more person had heard about GIST.

Since it was founded, the GIST Cancer Research Fund has raised approximately $440,000 exclusively for GIST research. The cornerstone fundraising event is the annual Walk For A Cure, held each October in Congers, NY. The walk has become the largest annual gathering of GIST patients, caregivers, researchers, doctors and pharmaceutical company representatives in the world. In 2005, more than 500 people from across the United States and as far away as Australia participated in the Walk. And her efforts have snowballed. A GIST patient in the United Kingdom, Peter Thomas, was inspired to organized a 1,000-mile, 10-day bicycle ride to raise money for the GIST Cancer Research Fund.

Money raised goes directly to the researchers at institutions that specialize in GIST cancer research, including Dana-Farber Cancer Institute in Boston, Fox Chase Cancer Center in Philadelphia, Memorial Sloan-Kettering Cancer Center in New York City, Oregon Health and Science University in Portland and University of Pittsburgh Cancer Institute.

When Tania and Robert visit these cancer centers to award grants, GIST patients – sometimes dozens of them, always accompany them. The doctors respond with presentations on their research, lab tours, and details on current developments and treatments in the research pipeline. The grant presentations have become educational workshops uniting GIST patients, caregivers and researchers.
Since her diagnosis, Tania shed tears, spent sleepless nights, felt anger and resentment, But from the gantlet of cancer emotions, shes emerged with two goals: to fight the disease, and help others in their fight. The following schedule of funds raised shows both the growth and success of Tania’s efforts.
2001: First Walk for a Cure raises $26,000
2002: Second Walk: $27,000
2003: $60,000
2004: $110,000
2005: $147,000
2006: $240,000

Grant presentations are made traditionally in the spring of each year. Not a penny of the money raised goes to administrative costs, overhead, salaries or such. One hundred percent of funds raised for GIST research goes directly to and only to GIST research.

Since founding the GIST Cancer Research Fund, articles about Tania, her efforts and/or the GIST Cancer Research Fund have been published in CR Magazine, the Jewish Press, the Rockland Review, the Rockland Journal News, the Fox Chase Cancer Center Newsletter and more. Shes been on talk radio shows by stations in both Rockland and Westchester Counties in New York, as well as New York City. Shes won praise, certificates, plaques and the more from Fox Chase Cancer Center, Memorial Sloan-Kettering Cancer Center, Oregon Health and Science University Cancer Institute and a certificate of special Congressional recognition from U.S. Rep. Ben Gilman.

Told she would soon die, Tania Stutman fought to live, and to help others. This continues to be her quest. Shell hit up potential donors during the morning, spend the afternoon talking to newly diagnosed GIST patients who call her from around the world, and at night write e-mails to GIST patients seeking advise on where to find GIST experts and the latest treatments.

Tanias own battle with GIST isnt over. The once-experimental drug she takes, Gleevec, turned out to be phenomenally successful against not only GIST, but also a type of leukemia and is in clinical trials for other cancers. But Gleevec doesnt cure GIST, just stops it. And over time, GIST becomes resistant to Gleevec. Tania has been fortunate so far; Gleevec is still controlling her tumors.

Another drug, Sutent, was approved against GIST this year. But GIST can overcome it as well. More research is needed, and that takes money, and thats what drives Tania. A cancer that strikes just 8,500 Americans a year doesnt attract big money. When the GIST researchers apply for grants, no matter how sound their science, they are usually turned down, with the federal research money going to the more popular cancers. This makes private funding from such nonprofit groups as the GIST Cancer Research Fund all the more important. Tanias Robert is the treasurer of the GIST Cancer Research Fund and stands beside her in all her efforts. Six volunteers all GIST patients or caregivers serve on the funds board of directors and provide oversight for the nonprofit. GIST Cancer Research Fund also has a medical advisory board; Dr. Ephraim Casper, chief of medical oncology at Memorial Sloan-Kettering Cancer Center, is chief medical advisor.

Tania Stutman may say she is only an average person. But she is certainly setting the bar high on what it is to be average. Tanis is indeed a most extraordinary average person.