V is for Victory
Support better outcomes for chordoma patients
Victoria's own battle with this rare cancer inspired her family to create this fund to help other chordoma patients receive access to potentially life-prolonging treatments, regardless of their financial situation. This initiative not only aids patients in getting to clinical trials, but also enables new clinical trials to launch, which are crucial for improving outcomes for countless other chordoma patients.
Testimonial
V is for Victory Fund
Dollars raised toward $40,000 goal
Together, we can help families affected by chordoma get more precious days, months, and years with their loved ones. Your donation today will:
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Fuel the laboratory work needed to identify new, effective chordoma treatments.
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Support the launch of new clinical trials for promising medicines.
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Enable chordoma patients to travel to those new trials.
More details about the initiatives supported by the V is for Victory Fund
Accelerate laboratory research. To generate and begin to test promising treatment discoveries in a laboratory setting, we invest in complementary and collaborative projects around the world. This includes work in our own research lab, Chordoma Foundation Labs (CF Labs), which we launched in 2022 to rapidly conduct the critical experiments needed to expedite novel chordoma treatments. Inspired by the sense of urgency felt by chordoma patients and loved ones like Victoria and her family, our first-of-its-kind lab is creating a new model for rare cancer research in which much faster paths to cures are possible.
Support the launch of new clinical trials. Our groundbreaking research approach is rapidly moving promising therapies from the lab to clinical trials. We provide support and expertise to help those trials open quickly.
Enable chordoma patients to travel to clinical trial sites. Removing obstacles to clinical trial participation is vital to propelling quick enrollment, so we provide assistance to chordoma patients for their travel to clinical trial sites. By ensuring that eligible individuals can participate in these trials regardless of financial barriers, we vastly accelerate the pace at which the drugs being tested can reach doctors’ toolkits for the benefit of a far greater number of chordoma patients.
Testimonial
Because of you, chordoma patients and their loved ones have reason for hope.
We're deeply grateful for the contributions of the Messina family, their friends, and each of you standing with us in this quest.
(You can use the Comment field when donating to send a message of support to Victoria and her family.)
A message from the Messina family
When you first get the news that your child has cancer, you’re in shock and out-of-your mind with grief. When you then hear that the cancer is so rare that, for someone our daughter’s age, it only occurs in one in every ten million people, panic and fear immediately set in.
Since Travis works in healthcare he has connections all over the country which allowed us to quickly access the world’s best hospitals and leading chordoma specialists. While this is undoubtedly a blessing for us, we cannot stand to think about all of the people who don’t have these connections or the means to travel to get treatment opportunities for themselves or their loved ones.
Our family started this fund to help chordoma patients get to the right places for treatment. These tumors are so complex and highly individualized that traveling for treatment is often a necessity.
In fact, the majority of chordomas are found by happenstance. In our case, I was taking Victoria to the ENT to discuss the reason for her unusually loud snoring. The moment she stuck out her tongue to show him her throat, he knew what we were dealing with. Her tongue had nearly completely atrophied on the right side and her doctor could actually see the tumor tissue coming down the back of her throat, which he then showed me. He put a camera up her nose and we saw that her nasal passages were completely blocked. Finally, all of the ear pain, snoring, tongue atrophy, and unconscious drooling all made sense.
After speaking with many specialists and hearing stories from other chordoma families, having an ENT who is able to recognize chordoma and correctly advise you on next steps is a rarity. We are certain that God led us directly to Dr. Todd Huber. We cannot thank him enough for remembering what he learned back in his residency. He said chordomas were always the morality tale of why you never biopsy a nasopharyngeal mass in the office. In the one-in-a- millionth chance it is chordoma, you’ve screwed up the entire management plan for the patient. We are forever indebted to him and blessed to call him a friend.
Everyone deserves the same chance for the best outcome.
Clinical trials are another critical factor in finding cures for chordoma. There are drugs on the horizon that could be game-changers for those living with chordoma, but without enough patients to participate, the clinical trials can’t take place. Recurrence happens in 50% of chordoma patients. Victoria is having every treatment available to her this first go round. If her tumor comes back, she’ll run out of options, since there is only a certain amount of radiation any of our bodies can handle.
We don’t want any patient to feel like they are left without a choice regarding the outcome of their future based on whether or not they can afford to travel and stay for the duration of a clinical trial. The “V is for Victory” fund aims to relieve the financial stress on patients so that they go take their shot at survival.
The more clinical trials we can successfully complete, the more curative options there will be for every single patient, including Victoria! It’s a win-win for everyone.
Paige, Travis, Victoria, and Wren Messina