Chordoma Foundation

The unsung heroes behind new chordoma models

Benita Valappil, the Clinical Research Director at the University of Pittsburgh’s Medical Center (UPMC), has been helping to advance research for more than 14 years. Her favorite part of the job is on Tuesdays, when she goes to the clinic to visit with the patients involved in her studies. It’s time she spends getting to know them, helping to ease their minds before surgery, and sharing updates on research underway now that could have a positive impact on their lives.

In her work with Drs. Paul Gardner and Carl Synderman at the Center for Cranial Base Surgery, Benita oversees more than a dozen various studies, many involving chordoma patients. But it wasn’t until one of those patients asked for help to send a sample of the tissue removed during his surgery to the Chordoma Foundation’s Biobank that she realized the untapped potential of the patient’s tumor sample to speed chordoma research and drug discovery.

Since then, with the help of our research manager Patty Cogswell, she’s put herself to work, volunteering an incredible amount of her own time and energy to funnel these samples to the Foundation’s repositories, singlehandedly collecting nearly twenty samples in the past year alone.

“I gravitated toward chordoma patients because of the aggressiveness of this tumor, and the low incidence and prevalence of the disease. When I tell them the Foundation is doing research that could be helpful to patients today, not just at some undefinable point in the future, it gives them hope. How could you not want to be involved in something like that?”

As one of our tumor donation program’s first two institutional partners, UPMC – with Benita at the helm – has been an invaluable ally. Together with our other institutional partner, Memorial Sloan Kettering Cancer Center (MSKCC) – led by office practice nurse and tireless patient advocate Roberta Sales – they have dramatically increased chordoma tissue donation and enabled the creation of new chordoma models that are fueling drug discovery.

Here’s how it works

When a chordoma patient comes into UPMC or MSKCC for surgery, Benita and Roberta are the ones who explain what to expect, answer their questions, and introduce them to any chordoma-relevant research underway that stands to impact their lives, and the lives of other chordoma patients.

Those who wish to participate in this research are asked for permission to send samples of the tumor tissue removed during their surgery to both the institution’s onsite research labs, and the Chordoma Foundation’s Tumor Donation Program. Some of the tissue sent to the Foundation is used for the development of new xenograft models – tumors grown in mice, which are critical for testing drugs prior to clinical trials. The remainder of the tumor is stored for future use by researchers through the Foundation’s Biobank.

Xenograft models that result from this effort are used in the Foundation’s Drug Screening Pipeline, which is the bridge that moves promising therapies out of the lab and into human clinical trials. But in order to generate the data needed to justify testing new drugs in patients, and ensure that those drugs will work for as many people as possible, it is essential to have multiple models created from multiple tumors.

Why they do it

“Getting the tissue samples from MSKCC to the Foundation involves a number of steps, and requires the time and commitment of a dedicated advocate to coordinate the process,” notes Roberta, who had been at MSKCC for almost ten years before coming into contact with her first chordoma patient. “But that’s never been a barrier. I do this because I love knowing that it will make difference in the lives of our patients. It is so important and I cannot imagine letting such a valuable opportunity to advance cures go to waste.”

A veteran of cancer research who has supported patients with all kinds of cancers through cutting edge medical and surgical procedures, Roberta was at first surprised to learn about how rare and understudied chordoma was, but has been amazed at how rapidly research has started progressing recently. Her work with Dr. Patrick Boland and his patients exposed her to the myriad of unmet needs in chordoma, and inspired her to make this work a priority.

“It became clear very quickly how unique and tight-knit the chordoma community is. It’s hard enough to get hit over the head with a cancer diagnosis, but even harder to learn that what you have is so rare. To be able to contribute to research on potential cures with no extra burden to the patient or physician is an incredible thing. I only wish I’d known about the tumor donation program sooner so that I could have sent more samples.”

Advice to other institutions that serve chordoma patients

Both Benita and Roberta agree that the additional work required to get these samples safely to the Foundation is offset by the difference they know it will make in the lives of their patients.

“The Foundation has been brilliant to work with,” said Benita. “In addition to being incredibly accessible and accommodating to its partners, it offers reliable information about navigating chordoma that helps our patients feel much less lost. To be able to give them the best possible care while they’re here, and then arm them with the Foundation’s resources to help guide them forward, is a wonderful thing. If you work with chordoma patients and have the ability to do this, it’s well worth the effort.”

We at the Foundation could not be more grateful for Benita and Roberta and their quiet, unflappable persistence on behalf of chordoma patients. Without asking anything in return, they routinely go above and beyond the call of duty to provide the samples that fuel our research, and bring every chordoma patient closer to a cure.