Annual Reports and Financials
A letter from our Executive Director, Josh Sommer
This past year was marked by several major turning points: achievements that changed what's possible in our shared fight against chordoma, opening fundamentally new opportunities for research and improved patient outcomes.
For example, three clinical trials we supported showed meaningful benefit for some patients with advanced disease, paving the way for an improved standard of care and future combination therapies. At the same time, enhanced capabilities in CF Labs unlocked entirely new therapeutic approaches for chordoma and dramatically streamlined progress toward drugs targeting chordoma’s Achilles’ heel, brachyury (TBXT). Additionally, by expanding our Clinical Trial Assistance Program, we took a big step toward removing the financial barriers to trial participation, while increasing the feasibility and speed of future trials.
We also planted seeds for future breakthroughs, including by launching the TBXT Challenge, a prize competition designed to catalyze breakthroughs in drugging brachyury, and by awarding a record number of research grants to uncover new therapeutic opportunities.
What all this means for patients is real opportunities for better treatments. Not someday, but soon.
In 2025, our path forward is clearer and more ambitious than ever: We'll launch trials based on recent discoveries from grantees and our lab, identify which patients benefit most from emerging therapies (and how these treatments can be combined for maximum impact), and move promising brachyury-targeted drugs closer to clinical testing.
None of this progress would happen without the dedication of many in our community. Every researcher applying their talents, every doctor providing expert care, every patient participating in research, every family hosting fundraisers, every donor writing a check — you're the driving force behind this year’s exciting milestones, and the reason we’re positioned for even more to come.
As our community grows and our collective progress compounds with each passing year, we're better equipped as a community to bring about the future we’re striving for. I’m sincerely grateful to everyone standing with us in this mission and can’t wait for what we’ll achieve together next!
Onward!
Josh
As we forge ahead, we remember those whose lives were cut short by chordoma, with deep gratitude for their courage and lasting contributions. We dedicate this Annual Report to Mac Sinise, who passed away in early 2024 after a five-and-a-half year struggle with metastatic chordoma.
Mac’s perseverance, his determination to pursue and endure every available treatment option, and the joy he shared, even in the face of his unimaginable challenges, inspired us and so many others in this community. His urgent struggle imparted even greater urgency to our work, and drove us to continually strive for faster ways to bring better treatments to patients.
Throughout Mac’s illness, his parents Gary and Moira Sinise — along with their family, friends, and community — contributed generously to accelerate the pace of research progress, including through supporting the launch of Chordoma Foundation Labs and recent clinical trials which yielded some of the first therapies that benefit patients with advanced disease. Though these new treatments were ultimately not enough to stop his disease, the benefit that they provide to others going forward will be an enduring legacy of Mac’s within this community.
Determined to finish what Mac started, and with the help of a generous supporter of the Gary Sinise Foundation, this year his family established the MAC Fund in his memory. Between fundraising inspired by Mac during his lifetime and contributions since his passing, the Sinise Family and their supporters have contributed an extraordinary $6 million and counting. Today, we’re putting those funds to work to accelerate new discoveries in our lab and expand patient access to clinical trials.
Thanks to Mac, and thanks to the remarkable generosity of all those he inspired, the timeline for solving the problems chordoma poses has been significantly shortened, and countless chordoma patients now have hope for better outcomes. For that, we’re profoundly grateful.
(Photo: Mac with his father Gary Sinise)
Testimonial
Research advances | 2024
Our clinical research strategy is focused on rapidly testing promising therapies for chordoma patients whose tumors can no longer be controlled with surgery or radiation. This year, three trials we enabled — testing pemetrexed, afatinib, and ERAS-601 + cetuximab — reported encouraging results, demonstrating the tangible impact of our research investments and providing potential new treatment options for patients.
These findings also provide a foothold for combination therapy approaches which could benefit more patients for longer durations. For example, building on these results, we supported the launch of a new trial testing pemetrexed in combination with pembrolizumab, which is now enrolling.
Additionally, to help more patients access clinical trials and enable trials to be completed faster, we expanded our Clinical Trial Assistance Program, reducing financial barriers for participation in any trial endorsed by our Medical Advisory Board. In parallel, we revamped our drug therapy list, making it easier for patients and their doctors to identify relevant treatment options.
Looking ahead, we see an opportunity to initiate at least six Phase 2 trials over the next three years, potentially including the first trials to support regulatory approval of drugs for chordoma. To make that possible, we need to further increase efficiency of chordoma trials, enabling them to be completed faster and at lower cost. To that end, in 2024, we invested in four complementary projects to define how chordoma patients have historically responded to drug therapies, which will provide a benchmark to guide smarter design of future trials and enable needed guidance from regulators about pathways to drug approvals for chordoma.
Next, with sufficient philanthropic support, we plan to invest in clinical trial infrastructure designed to speed trial initiation and accrual. Together, these initiatives will de-risk industry investment in chordoma trials and significantly speed the delivery of effective therapies to chordoma patients.
(Photo: Rick Gehl [L], patient and Perseverance Pledge donor, with family)
Research advances | 2024
Brachyury (also known as TBXT) is a key driver of chordoma and plays a role in multiple other cancers, but until recently has remained an elusive drug target. In the past year, we took big steps to change that.
Most notably, we launched the TBXT Challenge, a prize competition with an initial $500,000 purse to spur innovative approaches to drugging this target. The competition aims to harness a range of emerging technologies, including AI-driven and computational approaches, inviting researchers to develop potent brachyury-targeting compounds that could serve as starting points for various types of drugs. Because there are many approaches that have potential to solve this problem, but no way to know which is most likely to succeed, the challenge is designed to motivate diverse parallel efforts, expanding the pool of potential solutions beyond what would be possible by selecting individual projects to fund.
The challenge builds on new brachyury drug discovery capabilities in CF Labs, which dramatically lower the barriers for researchers and companies to apply cutting edge technologies and approaches to this critical target. Our new preclinical assays — showcased in an award-winning poster at the Connective Tissue Oncology Society’s annual meeting — provide a crucial foundation for evaluating potential drug candidates and advancing promising leads. As one notable example, data generated by CF Labs helped the company Talus Bio raise $11.2M in part to advance a brachyury drug discovery program.
Over the next three years, overcoming the remaining hurdles that have historically stalled early-stage discovery for difficult targets like brachyury will be critical. To that end, with sufficient capital, we will expand the TBXT Challenge, provide needed seed grants and venture funding for companies to advance brachyury programs, and scale up CF Labs' capabilities to advance a growing pipeline of brachyury drugs — together, dramatically improving the chances of developing brachyury-targeting therapies for chordoma and potentially other cancers.
(Photo: CF Labs scientist Lee Dolat, PhD)
Research advances | 2024
This year, encouraging results from clinical trials we supported demonstrated how investments in laboratory research can uncover new therapeutic opportunities that impact the lives of chordoma patients. Yet the need for additional, more effective, and more personalized treatments remains urgent. To accelerate the discovery of new therapeutic options, we awarded nine new grants totaling $2 million to leading research teams across the U.S. and Europe. Complementing this financial support, we provided research materials, such as chordoma tumor tissue or cell lines, to 23 grantees or collaborators in 2024.
These investments enabled talented new scientists to apply their expertise to chordoma research for the first time, while also deepening our partnerships with teams at leading chordoma research centers such as the German Cancer Research Center (DKFZ), MD Anderson, and NYU. Notably, at NYU our investments build on the ambitious chordoma research program launched there in 2021 with the generous support of the Bergman Family and others.
These new projects target three crucial areas: deepening our understanding of brachyury biology and how to attack it, identifying therapeutic targets on the surface of tumor cells, and pinpointing strategies for more personalized treatment approaches. Moving forward, we will translate the insights generated by these grants into patient-focused advances — including strategies to overcome treatment resistance, identifying optimal therapies for individual patients, and unlocking entirely new treatment modalities such as immunotherapies, antibody-drug conjugates, and radiopharmaceuticals.
(Photo: CF grantee Itai Yanai, PhD, of NYU)
Research advances | 2024
Increasingly, CF Labs is a driving force in the chordoma research ecosystem, generating the rationale for multiple new therapeutic approaches now moving toward clinical trials. In 2024, our scientists presented results of three projects at the world’s leading sarcoma research conference, receiving awards which underscore the growing impact of our lab.
For example, research in CF Labs revealed that the combination of the chemotherapy drug gemcitabine with inhibitors of proteins called WEE1 or ATR act synergistically to kill chordoma cells in a highly potent manner. These concepts are now being tested in mouse models and could serve as the basis for upcoming clinical trials.
Additionally, one of the key functions of CF Labs is to create, optimize, and share experimental techniques involving chordoma cells to prevent the need for duplication of effort by other labs and to enable greater reliability and inter-lab comparability of results. Recent and ongoing work in this area includes optimizing protocols for cell culture, cell-based drug testing, and CRISPR gene editing.
In the year ahead, we’ll generate the additional data needed to advance more well-justified therapeutic concepts into new clinical trials. And we’ll continue to leverage CF Labs’ capabilities as a tool to incentivize crucial industry investment in drug development for our rare disease.
(Photo: CF Labs scientist Nindo Punturi speaking at CTOS)
Research advances | 2024
When we launched CF Labs, we hoped and suspected it could help overcome the barriers that slow progress in rare disease research and create a faster, more effective path to new treatments. In its first three years, the lab has exceeded expectations — uncovering promising drug repurposing opportunities, advancing the search for brachyury drugs, and equipping academic and industry partners with more resources needed to engage in chordoma research.
The early success of CF Labs has caught the attention of leaders in biomedical research, including the Chan Zuckerberg Initiative, which awarded us a $500K grant in 2024 to help accelerate our learning in CF Labs and demonstrate the potential of this new research model to expand what’s possible in rare disease research.
One of the things this grant will allow us to do is unlock the potential of artificial intelligence (AI) in drug discovery. AI has the power to identify vast numbers of potential drug targets and chemical compounds, but most AI-focused companies and investigators lack the lab capabilities to easily test their novel drug candidates in biological systems. CF Labs is filling this gap by allowing AI-generated treatment hypotheses and compounds to be tested in disease-relevant models, and incentivizing AI companies to use chordoma as a proving ground for their technologies.
By unlocking the potential of AI and other emerging technologies, CF Labs is not just accelerating chordoma research — it’s pioneering a model that could help drive progress for many other rare diseases.
(Photo: Above our CF Labs benches hang photos of patients — the people at the heart of everything we do — like this one of 15-year chordoma survivor Frankie Fernandes)
Our research investments culminated in 12 new research papers and conference abstracts in 2024. Additionally, we posted seven new sets of results from CF Labs to our data repository, enabling others to build on our work as quickly as possible — without waiting for publication. We deeply appreciate our grantees, collaborators, and all of the researchers worldwide whose insights, initiative, and passion are driving this knowledge growth.
Testimonial
Resources and Education | 2024
We're committed to being there for patients not just during active treatment, but for the long haul of survivorship that follows. To that end, we launched a personalized survivorship care plan service to give patients tailored guidance for managing side effects, keeping up with follow-up care, and finding the right support.
This service is the latest addition to a full suite of survivorship resources we built over the last five years based on needs expressed by 800+ patients and caregivers in our survivorship survey. These include educational resources about life after treatment, virtual support groups, our online community Chordoma Connections, and more.
(Photo: Patient Joan Burge [C], celebrating with loved ones)
Resources and Education | 2024
There's something powerful about being in a room where everyone just "gets it" — where you don't have to explain what chordoma is or why it matters. In 2024 we kicked off a new event series, Chordoma Community Days, and held the first ones in Houston, Chicago, and San Diego. These gatherings give patients and caregivers a chance to swap stories and advice with others facing similar challenges right in their own backyard, and hear from expert speakers about the latest research and treatment insights.
The response was so positive that we're keeping them going in 2025 with dates in Germany, Jacksonville, San Francisco, and Jersey City. Attendees will hear from leading researchers and doctors about new advances, learn about managing physical and emotional challenges that can come with chordoma, and have plenty of time to connect with others in our community. We'd love to see you there!
(Photo, L to R: Dani Pike, John and Carol Siedhoff, and Alyssa Lee at our Chordoma Community Day Houston)
Resources and Education | 2024
In 2024, our Patient Navigation Service provided personalized guidance to 630 patients and families around the world — our highest ever annual number. Our Navigators are here for patients and caregivers at any point in their journey, whether newly diagnosed or many years into survivorship. Need help making sense of treatment options? Looking for info about clinical trials? Reach out whenever you need a hand.
This year we also expanded our global reach: We launched a Chordoma Foundation Europe website to better connect with and serve our European community members. We welcomed four terrific new volunteer Ambassadors in the UK, France, and Australia (bringing us to 16 Ambassadors worldwide!). And we started new online support groups in Spain, The Netherlands, and Germany. No matter where patients are in the world, we're working to make sure no one faces chordoma alone.
(Photo [L to R]: CF staff members Shannon Lozinsky, MSW, Andrea Locke, Dani Pike, Ashley White, and Kimberley de Haseth)
Testimonial
Resources and Education | 2024
Sometimes the most valuable support comes from someone who's been in your shoes. That's the heart of our Peer Connect program, where volunteers like sacral chordoma survivor Susan Hall offer a listening ear and genuine understanding to others on their chordoma journey – whether they're weighing treatment options, managing side effects, or navigating shifts in work or relationships during illness.
Susan stands out for her ability to help people find their place in our community. Many who initially reach out for personal support end up discovering meaningful ways to help others affected by chordoma, such as by donating, fundraising, or becoming Peer Guides themselves.
“When I was first diagnosed with chordoma, it felt like the rug was pulled underneath life as I knew it,” Susan recalls. “My Peer guide helped me regain my footing. And being able to pay it forward is one of the most fulfilling things I’ve ever done.”
If you're a patient or caregiver wanting to talk with someone who understands what you're going through, we can match you with one of our trained Peer Guides. The relationship can be a one-time conversation or an ongoing connection – whatever helps you most on your journey.
(Photo: Patient and Peer Guide Susan Hall with her partner Tim)
Our Team | 2024
Behind every milestone is our dedicated team — staff, Board members, advisors, and volunteers — whose commitment drives this work forward each day. In 2024, we added new talent to advance our mission more quickly and capably than ever before: Jesse Bongartz, Head of Finance and Operations; Caitlin King, Research Technician and Lab Manager; Tyler Vincent, Research Associate; and Ashley White, Research Program Manager.
Additionally, our Board of Directors welcomed Lauren Mulholland, who brings extensive experience in finance and organizational growth. A spinal chordoma survivor, Lauren has already mobilized her extraordinary network to support Chordoma Foundation Labs and our broader mission. To our Medical Advisory Board, we added Mary Frances Wedekind, DO of the US National Institutes of Health, who leads the Natural History Study of Rare Solid Tumors and is one of the world’s leading experts in the treatment of pediatric chordoma.
Finally, we thanked Christy Shaffer for completing her time on our Board of Directors. Over her eight years of service, Christy helped us evolve from fledgling to formidable, and her insights and connections were instrumental in shaping our research strategy and launching Chordoma Foundation Labs. We’re immensely grateful for her many contributions, past and ongoing, which will have an impact for years to come.
Want to be part of what's next? We'll soon be hiring for several new openings. If you or someone in your network is looking for an exciting role with a chance to make a direct impact on our community and raise the bar for patient-driven research, keep an eye on our Careers page.
(Photo, L to R: CF staff members Dan Freed, PhD, Kenny Brighton, Sara Nick, Dani Pike, and Josh Sommer)
Taking Action | 2024
When someone you love is facing chordoma, the instinct to take action can be powerful. When that person is your child, you’ll move mountains to give them every chance at a long and healthy life. That’s what inspired the Messina family, whose daughter Victoria was diagnosed with chordoma in 2024 at the age of 14, to start the V is for Victory Fund — a fundraising campaign dedicated to ensuring the best possible outcomes for Victoria, and for everyone affected by this disease.
The fund has already raised nearly $170,000 toward developing better chordoma treatments, moving them into new clinical trials, and enabling more patients to travel to participate in those trials.
“We were fortunate enough to be able to meet with the world’s leading chordoma specialists and to have means to relocate to Boston for eight months for Victoria’s treatment,” says Paige Messina, Victoria’s mom. “The more patients who are able to participate in clinical trials, and the more data we’ll collect, the better off we all are in fighting this rare cancer. A positive outcome for one patient is a victory for all of us!”
We’re deeply grateful for the generosity of the Messina family and their network, whose efforts are helping to ensure that other chordoma patients and their families can receive the same expert care and access to potentially lifesaving treatment options that Victoria was given.
(Photo: Patient Victoria Messina [R] and her sister Wren with Wally the Green Monster)
Thank you for powering our progress!
Expand each section below to view the many individuals and organizations whose gifts added up to make 2024 a year of significant, long-lasting progress. We sincerely appreciate every contribution!
Special thanks to donors whose multi-year pledges make possible the long-term term investments that are crucial to the success of our mission. Consistent with our accrual-based accounting method, the full amount of multi-year pledges is recognized in the year in which the pledge is made. Pledge payments are denoted in subsequent-year annual reports with an * but do not contribute to revenue in that year.
It’s very important to us to acknowledge each gift accurately and in accordance with each donor's wishes. If we have made any errors or omissions in the lists below we apologize and we are eager to make them right. We welcome you to contact us with any questions, comments or corrections.
Our IRS Form 990 and audited financial statements will be added to this report when finalized. Previous years’ 990s and financial statements can be found here.
Testimonial
Individuals who host online and in-person fundraisers play a crucial role in advancing our mission to develop new therapies and provide essential services for those navigating this disease. As newly diagnosed patient and first-time fundraiser Heidi Herbert put it, “even in our most challenging moments, there’s an opportunity for hope.”
Here are just a few of the many individuals and families who enlisted the generosity of their networks in 2024 to make a difference for everyone affected by chordoma.
We’d be excited to see you launch a fundraiser in 2025! Reach out to Dani Pike to get started.
Fourteen-year chordoma survivor Steven Mandel’s beloved and growing race tradition has raised $500K+ over the years, with notable help in 2024 from the Mulholland family, Jack Dworkin, Marie Perillo, Adriana Pentz, and many more. (Save the date: Team Chordoma is returning October 5, 2025!)
To show support for her childhood friend Taylor's ongoing battle with chordoma, Victoria Rainone took on the NYC Marathon in her honor, raising more than $13K for the Chordoma Foundation in the process. Meanwhile, Taylor’s partner Richard Lipman also held a virtual fundraiser, bringing in another incredible $15K.
Despite facing chordoma-related challenges, Owen graduated high school in 2024, showing incredible bravery and positivity along the way. To help celebrate this milestone, he and his family organized a virtual fundraiser to support our mission.
Faced with a new chordoma diagnosis in 2024, Heidi Herbert invited her friends and family to send support from afar via an online fundraiser, raising more than $7K so far to aid our search for cures.
After losing Rob Realmuto to chordoma, his loved ones hosted a poker tournament for the Chordoma Foundation, bringing people together to remember Rob and raise $12K to bring about better treatments for this disease.
Ten-year chordoma survivor Todd Balf and his friends embarked on an ambitious bike journey from Pittsburgh to Washington, DC, raising nearly $20K to support research in CF Labs!
Taking action
Today there are unprecedented opportunities to make progress against this disease, and your generosity will enable us to seize them without delay.
By making a gift or becoming a monthly supporter, you'll help ensure we can act quickly on every opportunity to advance the treatments that chordoma patients so urgently need.
(Photo: 14-year chordoma survivor Tova with son)
Testimonial