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What the chordoma community achieved by going ALL IN

ALL IN contributors enabled significant progress, creating real reasons for hope for everyone affected by chordoma.

Taking action

In 2017 we launched our ALL IN campaign: an ambitious $16M initiative aiming to seize extraordinary opportunities in chordoma research and improve patient experiences. Today, we’re excited to share that thanks to the generosity of more than six thousand supporters, we’ve crossed the ALL IN finish line.

ALL IN contributors enabled significant progress, creating real reasons for hope for everyone affected by chordoma. Today we’re reflecting with pride and gratitude on what we’ve achieved by going ALL IN together, and looking forward to increasingly rapid progress on the horizon.

Brachyury drug discovery: from longshot to reality

Until very recently, scientists saw brachyury — chordoma’s Achilles’ heel — as an “undruggable” target; an unsolvable problem. ALL IN has turned that on its head: the major obstacles have been cleared, several of the world’s premier drug hunters are taking on brachyury, and remarkably rapid progress is being made along multiple paths. From these efforts, the first chemical tools have been created that can suppress brachyury in chordoma cells, and now the race is on in multiple labs to turn these into drugs that will work in patients.

Immunotherapy: new targets and therapeutic strategies emerging

Before ALL IN, little was known about whether or how chordoma patients could benefit from immunotherapy advances that are revolutionizing treatment of certain other cancers. Today, hints of immunotherapy success have been seen in some chordoma patients, potential new immunotherapy targets have been discovered, and progress has been made toward the first cell-based immunotherapy for chordoma. Meanwhile, several projects have gotten underway which are generating crucial knowledge about how chordoma cells evade the immune system, and how these defense mechanisms may be neutralized. The door is now open for rapid development of immunotherapies against chordoma.

Drug repurposing: many more shots on goal

Finding an existing drug capable of treating chordoma offers the best chance of improving patient outcomes in the near term. But before ALL IN, drug repurposing for chordoma was just getting started, our ability to evaluate promising drug candidates was limited, and only a handful of drugs had ever been tested in animal models. Now, all 6,000+ approved drugs have been systematically tested in chordoma cells, more than 60 drugs and combinations have been evaluated in chordoma mouse models, and three new clinical trials have gotten underway — two of which have already completed enrollment. At the same time, funds from ALL IN have expanded the capabilities of our Drug Screening Program, which now allows emerging drugs to be evaluated in chordoma faster, more efficiently, and more thoroughly than for almost any other rare cancer.

Patient experience: support available at every step of the journey

ALL IN resulted in the creation of a wide array of new resources for patients, survivors, and caregivers, including several peer-to-peer support options such as our online community, Chordoma Connections, and virtual support groups, as well as a trove of new educational content tailored to the range of patient experiences. Now, not only can patients turn to the Foundation for guidance and support when facing diagnosis or a recurrence, but through our Survivorship Initiative the Foundation is here as a resource to help survivors and co-survivors live well at every step of the journey with chordoma, including after treatment ends. Now, we’re on the cusp of expanding our Patient Services internationally so that chordoma patients everywhere can benefit.

Clinical learning: collaborative efforts underway

Understanding the range of possible outcomes for chordoma patients is crucial for improving how the disease is treated and for getting new drugs approved. Thanks to ALL IN, we partnered with the National Cancer Institute (NCI) and leading chordoma physicians to launch the most comprehensive study to date of chordoma’s natural history, as well as a Chordoma Clinic for pediatric and young adult patients. At the same time, we’ve begun work creating a centralized clinical data repository that will serve not only the NCI study, but will also allow other researchers to answer important questions that arise in the future.

A springboard for future progress

These achievements are bolstered by additional investments made possible by ALL IN that are laying the groundwork for future advances, like projects to identify molecular subtypes of chordoma and drivers of metastasis — crucial steps towards developing more personalized treatment strategies for chordoma patients. We’ve also attracted new talent to the thriving worldwide chordoma research community, increased our internal research capacity, and expanded our research-enabling infrastructure — allowing us to catalyze chordoma treatment development like never before.

Together, the strides made possible by ALL IN have made a lasting change in what it’s like to face chordoma, have permanently increased the feasibility of chordoma research, and have opened up multiple potential paths to new therapies both in the near term and in the coming years.

For this, we are deeply grateful. To those who donated and inspired others to donate. To our Campaign Committee members who led the charge. To the foundations and institutions with whom we partnered. To the doctors and scientists who pushed research forward — even through the pandemic. And to the many patients who participated in that research.

Because of this collective achievement, there are more reasons to be hopeful than ever before, and, with hope, every reason to take part in solving this problem. We look forward to continuing to work with this remarkable community to build on the current momentum and push our mission forward until everyone affected by chordoma can overcome it.

Ways to help

We know chordoma is a solvable problem. How fast it gets solved depends on the contributions of every one of us affected: whether by donating, hosting a fundraiser, or participating in research. There are lots of opportunities for each of us affected by chordoma to fuel research advances that will dramatically improve treatments and outcomes.

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