Thank You!
For Attending The New York Walk For A Cure

GCRF is proud to announce that our own Tania Stutman, Founder and Chairperson of the GIST Cancer Research Fund, has been awarded the James Ewing Layperson's Award by the Society of Surgical Oncology (SSO). The James Ewing Layperson’s Award recognizes a non-physician who has contributed to cancer research, education, or advances in treatment through philanthropy, public education, or by personal example. For 24 years, Tania has dedicated her life to finding a cure for GIST Cancer. While she is a GIST patient herself, she has persevered through personal tragedies and health issues and never once has given up her goal of spreading awareness and finding a cure.  She is a true warrior and we are so proud of her and congratulate her on this well-deserved honor.  Click here to view the list of the past prestigious recipients of the James Ewing Layperson's Award.

Ronald P. DeMatteo MD

Gastrointestinal stromal tumors are the most common human sarcoma and are largely driven by activating mutations in KIT or PDGFRA genes. While tyrosine kinase inhibitors (TKIs) like imatinib have revolutionized therapy for GIST, 10-20% of patients present with GISTs that are resistant to TKI therapy. Furthermore, TKIs are rarely curative, and the majority of patients with certain high-risk tumors have disease recurrence within 5 years. Therefore, the development of improved and novel therapies remains essential. Our lab focuses on immune and molecular combination therapies that aim to augment the efficacy of these tyrosine kinase inhibitors.

We have recently developed the first patient-derived xenograft of PDGFRA D842V-mutant GIST, the most common PDGFRA mutation that is also resistant to
imatinib and most other TKIs.

Ping Chi MD, PhD
Memorial Sloan Kettering Cancer Center

The overarching goals are to understand GIST development and pathogenesis. We aim to build models that accurately represent how GISTs behave in the body, and develop new drugs with the potential to cure the disease. The lab is currently exploring the roles of two crucial proteins, FOXF1 and ETV1, that are vital for the survival of certain cancer cells in GISTs, and its research encompasses several innovative projects aimed at improving treatment outcomes. One of the Chi Lab’s primary focuses is targeting ETV1 using a combination of two drugs: a KIT inhibitor and a MEK inhibitor (MEKi). This approach is currently being tested in a clinical trial for patients with advanced GIST. Additionally, the lab is investigating whether combining a MEKi with imatinib, the standard treatment for metastatic GISTs, can enhance outcomes as a first-line therapy. This study, conducted as a randomized phase 2 multicenter clinical trial, could hold the potential to revolutionize global care for these patients. The lab is also working on developing new drugs that can target FOXF1, which regulates both KIT and ETV1 genes, making it a favorable target for improving GIST survival rates. Understanding the GIST ecosystem — how the body’s normal cells, molecules, and blood vessels contribute to the cancer’s survival, metastasis, and drug resistance — is another critical area of research. By gaining insights into these factors, the Chi Lab hopes to create new treatments and develop a comprehensive model of GISTs, particularly focusing on how the cancer spreads to the liver.

Cristina R. Antonescu, MD, Memorial Sloan Kettering Cancer Center

As a result of the generous GCRF funding, we were able in the past year to make significant progress on defining the genomic landscape and biomarkers to better assess risk of malignancy in GIST.

This study was triggered by the many existing limitations of the current risk stratification schemes in GIST. To mention a few, the conventional guidelines for risk assessment were defined in the pre-imatinib era and rely solely on clinicopathologic metrics: tumor site, tumor size, and mitotic activity. These risk models have performed inconsistently in differentiating potentially aggressive from indolent clinical behavior, offering limited guidance on adjuvant therapy. Additional significant limitations of the current prognostication include the lack of integrated molecular biomarkers and not accounting for the imatinib sensitivity of the primary GIST genotype.

In this project we specifically investigate means of extracting additional information from large-scale genomic landscape signatures, focusing on selecting and validating prognostic biomarkers of tumor progression. By applying a targeted hybrid capturebased next-generation sequencing assay to determine the mutational and copy-number landscape in a large GIST cohort with comprehensive and detailed clinicopathologic annotation from a single tertiary center, we were able to identify molecular determinants of aggressive clinical behaviors that can be used as the next-generation, genomic based risk prediction in GIST in the present imatinib era.

Download the entire report by clicking the button below.

The primary goal of Dr. von Mehren’s work is the testing and evaluation of new therapies for soft tissue sarcomas. Each year, approximately 7,000 new cases of are diagnosed in the U.S., with only about 50 percent of patients surviving their disease. For those whose sarcoma recurs, the limitations of current treatments lead to even lower survival rates. Dr. von Mehren has a particular interest in developing novel therapies for GIST, the most common sarcoma of the intestinal tract. GIST is characterized by the presence of a growth factor called KIT on the surface of tumor cells. In most cases, mutations in the KIT gene – and in rarer cases, in PDGFRA, BRAF, or SDH – activate the protein, driving tumor cells to continuously grow and divide.

Dr. von Mehren and the GIST laboratory have long focused on understanding and treating tumors that do not respond well to standard targeted therapies. These include subset of GIST without activating mutations (SDH deficient, NF-1 mutated or quadruple negative GIST), as well as tumors that have developed resistance to approved treatments.

“I started with just a little website,” Tania says. “I went on local radio. I went to our local paper and told them my story.” In 2001, she held her first walkathon and raised $23,000. In 2018, the foundation has raised more than $10 million dollars and every penny has gone to GIST Cancer Research.

United States Senator, Charles “Chuck” Schumer graciously acknowledged the GIST Cancer Research Fund with a proclamation for the importance of the numerous contributions that the GIST Cancer Research Fund and the Walk For A Cure has made to find a cure for GIST Cancer.

Michael Heinrich, M.D.

Understanding mechanisms of resistance

 Recently, two new drugs (avapritinib, ripretinib) have become approved for treatment of advanced GIST.  These drugs provide new therapy options, but already we have seen clinical resistance to these new drugs.  In order to continue to improve treatments, we need to understand the ways by which GIST cells can overcome these new “wonder drugs”.  We have established new technologies and cell lines to determine the mechanisms of resistance to these agents.  Using our improved technologies, we can “fast forward” our experiments to more rapidly discover new resistance mutations. We will study resistance mechanisms to new drugs that are being tested in clinical studies in 2024-2025:  IDRX42, NB003.  We have already completed pilot experiments with ripretinib, avapritinib, IDRX42, and NB003.  In addition, we have identified a new drug, SB21-01, which may overcome certain resistance mutations which other drugs cannot inhibit.

Developing strategies to optimize the treatment of PDGFRA-mutant GIST

Avapritinib is a recently approved drug for treatment of GIST with PDGFRA exon 18 mutations, particularly the imatinib-resistant PDGFRA D842V mutation.  It is widely believed that all PDGFRA exon 18 mutant GIST are resistant to imatinib but have developed evidence that this is not true. We are developing cell lines and prediction models that will help clinicians chose between imatinib and avapritinib for initial treatment of advanced GIST with PDGFRA exon 18 mutations.  In addition, we are developing models and strategies to overcome avapritinib resistance as currently there is no effective therapy.

Analysis of Succinate Dehydrogenase (SDH) Subunit Mutations in a human cell model

Mutation of various SDH subunits is seen in some cases of wild-type GIST, especially GIST arising in children or younger adults.  These mutations can be sporadic or inherited as part of the Carney-Stratakis Syndrome.  Recently, we have developed the first human cell lines that are deficient in SDHA, the most common type of mutation in SDH-deficient GIST.  We are using these cell lines to assist in the diagnosis and genetic counseling of patients with potential inherited forms of GIST. In the past year we have been able to profile > 70 SDHA mutations.  In addition, we will use these cell lines to screen for novel treatments for SDH-deficient GIST.  In collaboration with UCSD, we discovered that SDH-deficient cells are uniquely sensitive to an existing mild oral chemotherapy agent (temozolomide).  As part of a consortium, we recently completed a phase 2 study of temozolomide for treatment of SDH-deficient GIST. We will continue to develop our cell line bank and study new therapeutic approaches  We are now testing the efficacy of the combination of temozolomide and a DR5 agonist antibody (INBRX-109) for treatment of patients with advanced/metastatic SDH-deficient GIST.  Using our pilot data, we have recently obtained NCI U01 Federal funding as part of a consortium to further study SDH-deficient GIST.  In addition, we have developed a new higher throughput model to characterize SDHA and SDHB mutations.

We will provide and update on the above studies at the October 2025, GCRF patient event at OHSU.

You're Invited!

The OHSU Foundation invites you to the

2025 GIST Educational Conference

Join the OHSU Knight Cancer Institute and the GIST Cancer Research Fund
for a one-day educational conference highlighting advancements
in Gastrointestinal Stromal Tumors (GIST) research.

Thursday, October 16, 2025
9:00 a.m. to 2:00 p.m.
Portland, Oregon

Knight Cancer Research Building - Auditorium
2720 S Moody Avenue
Portland, OR 97201

Click the button below to RSVP and register.
For other questions/RSVP: nolenl@ohsu.edu or 503-552-0681

A look behind the scenes in the lab of Dr. Michael Heinrich and Dr. Chris Corless at the Oregon Health & Science Center/Knight Cancer Institute. Here is an overview of the current research being performed to find a cure for GIST Cancer.

GIST is a rare form of cancer that most doctors misdiagnose or are not familiar with the appropriate treatment. If you or a loved-one is diagnosed with GIST, getting in touch with a physician who specializes in GIST Cancer is of utmost importance. These doctors and researchers deal with this disease on a daily basis and can help guide you to the right treatment.

In addition to the GIST Cancer Research Team of physicians, researchers and nurses, the following link will put you in touch with domestic and international GIST Cancer specialists.

In 2012, The GIST Cancer Research Fund and Robert and Tania Stutman were honored by Memorial Sloan Kettering Cancer Center for GCRF’s generous donations given for GIST Cancer Research. Their names were etched into MSKCC’s donor wall for posterity. For almost twenty years, The GIST Cancer Research Fund has been tirelessly fighting to raise funds to eradicate this deadly disease with no staff, corporate headquarters or overhead. Since 2002, the foundation has raised more than $10 million and MSK has been the beneficiary of $1.6 million. Events including walkathons, 1,000-mile Cycling for a Cure bike rides, golf outings and galas now span the nation. (Other GCRF beneficiaries include Fox Chase, Brigham and Women’s Hospital in Boston, Oregon Health Sciences University Cancer Institute, and MD Anderson Cancer Center in Houston.) At MSK, the GCRF supports the work of Dr. Antonescu and Dr. Ping Chi.

Robert and Tania Stutman join the generous philantropists including Susan G. Komen, who donate to MSKCC. The GCRF has raised $10 million dollars for GIST Cancer Research and has given 100% of these fund to finding a cure for GIST Cancer. As Tania Stutman said, ‘I’m not only battling for my life, I’m fighting for the lives of others.’”

Walt Frazier is a two-time NBA champion with the New York Knicks, a seven-time NBA All-Star and a member of the Basketball Hall of Fame. His retired No. 10 Knicks jersey is hanging in the rafters in Madison Square Garden. The NBA veteran is also known to be the GCRF's very own spokesperson. Walt has attended the GCRF New York Walk For A Cure for 18 years. His loyalty and commitment to GIST Cancer Research is relentless and he always finds the time to "be there" for the GIST Cancer Research Fund in good times and bad. Thank you Walt for all you have done and know that we hold a special place for you in our hearts!

Photos from the 2025 Walk For Cure

Walt Frazer and Ronald P. DeMatteo, MD, FACS, Perelman Center for Advanced Medicine

GCRF, Robert Stutman presenting Walt Frazer with 80th Birthday Cake.

 Walt Frazer speaking to walkers while GCRF, Tania Stutman looks on.

The donation to the GIST Cancer Research Fund was for $10.00.  This was one of the most generous donations that we have received because it was from the heart.  Please remember this when you give to GCRF.  Every dollar counts to find a cure!