An uncommon level of commitment from the chordoma patient community has been the key driver of new discoveries that are changing the outlook for this disease. There are numerous opportunities for each of us affected by chordoma to fuel research advances that will dramatically improve treatments and outcomes. (Not a patient? Not a problem: See #4 and #5 below for how you can help drive progress.)
Chordoma survivor Ed Les and friends
1. Donate your tumor tissue.
Tumor tissue is critical for cancer research. But because chordoma is so rare, scientists have struggled to gather enough samples to learn what drives this disease and how best to treat it. You can help investigators overcome this challenge by donating tumor tissue to the Chordoma Foundation Biobank. The tumor donation process is relatively simple for patients; your main task is to complete a form. Tumor tissue collected during your surgery is transferred to our central repository for storage, where it’s preserved and protected before being sent to qualified researchers to advance chordoma science.
2. Participate in the Natural History Study.
Enrolling in the National Cancer Institute’s Natural History Study of Rare Solid Tumors is a way to help researchers answer questions about chordoma that are important for identifying and testing better treatments. The study is compiling information and tumor tissue samples from chordoma patients to better understand how the disease behaves in the body over time — knowledge that is critical for improving care and designing future clinical trials. Chordoma patients and survivors anywhere in the world and at any stage of treatment — before, during, or after — are able to enroll, and aren’t required to travel to the National Institutes of Health to participate.
3. Join a clinical trial.
Clinical trials — studies to determine whether drugs are safe and effective — can provide you with an opportunity to receive new, experimental therapies that could be more effective than currently available options. In addition to potentially benefiting from the latest treatments, you’ll contribute to knowledge that will guide treatment for future patients and help identify new ways of treating chordoma. Our Clinical Trials Catalogue is a resource for you and your care team to find trials specifically for or relevant to chordoma patients.
Additionally, the new TRACK (Target Rare Cancer Knowledge) Study from TargetCancer Foundation is an observational study that seeks to determine whether patients benefit from treatment guided by genomic profiling. As part of the study patients and their physicians will receive a FoundationOne genomic profiling report along with personalized treatment recommendations from a virtual molecular tumor board — a group of doctors skilled at interpreting molecular profiling results. Patients anywhere within the U.S. are eligible to join, and participation is mainly remote.
4. Make a donation.
Donations of all sizes have been directly responsible for chordoma research progress to date. Now, further contributions are needed to build on extraordinary recent momentum and reach new milestones: like new clinical trials, development of immunotherapies for chordoma, and the discovery of the first drugs against chordoma’s Achilles’ heel, brachyury. When you donate, you’re joining a community of people who’ve come together in a remarkable way — funding millions of dollars in research to accelerate the pursuit of better treatments. And if you make a Perseverance Pledge by setting up a recurring donation, each month you’ll bring us that much closer to a cure.
5. Become a Chordoma Champion
Chordoma Champions are volunteers who reach out to their personal networks to ask them to support the Foundation’s work. To become a Champion, simply create an online fundraising page to share your chordoma story. Then send the link to your family, friends, and colleagues explaining why their donation would be important to you. When you join our Champions community, “you’re able to give the Foundation an amount that you couldn’t write a check for by yourself,” says Renée Butler, a patient’s parent who has raised thousands for chordoma research. “As a donor, that’s such a meaningful opportunity.”
We’re here to help you get involved in the ways that are right for you. For more information on contributing tumor tissue or participating in a study, contact our Patient Navigators. If you have questions about becoming a Chordoma Champion or making a gift of any kind, reach out to our development team. To follow the research progress that patients make possible, sign up for our newsletter.