3 Foundation-supported trials completed enrollment
testing the drugs pemetrexed, afatinib, and nivolumab.
Owning our destiny
A letter from our Executive Director, Josh Sommer
The Chordoma Foundation was founded out of a desire for those of us affected by this disease to gain agency over our own futures. In the time since, together, we've transformed the experience of patients and caregivers, advanced research that has resulted in almost a dozen new potential treatments, and set the stage for much more powerful therapies on the horizon.
2022 marked a significant leap forward: It was the year we launched Chordoma Foundation Labs, which is bringing a new level of speed and efficiency to the treatment development process. In our lab’s first year, we set up the ability to quickly and reliably run a variety of important experiments, generated data that supported two new therapeutic concepts, and demonstrated the powerful synergy that’s possible between a patient-led lab and partners in academia and industry. For the first time, we now have the ability to translate discoveries into new treatments at a pace that matches the sense of urgency we feel.
In parallel, we invested in high-impact research across the R&D continuum, and continued to expand our resources to help chordoma patients, survivors, and caregivers navigate all stages of their experience.
The year also held deep personal significance: I faced a recurrence and successfully recovered from surgery, making the recent wave of encouraging research developments feel all the more meaningful. From this setback I have emerged with a new level of appreciation for the strength and dedication of the Chordoma Foundation’s team, for the doctors and researchers who work tirelessly to improve treatment options for patients like me, and for everyone who stands with us in our mission.
I'm excited to share our Annual Report, which reflects my growing sense of optimism for the future that’s possible with your help in bringing our shared vision to life. Thank you for giving patients like me a real reason to hope that we can outrun this disease.
Onward!
Josh
A landmark year for chordoma research
2022 marked a major turning point for our and our partners' ability to identify more — and more promising — drugs that could change the outlook for chordoma patients, and rapidly move them from the lab into clinical trials.
3 new trials opened to chordoma patients
based on data produced through our Drug Screening Program.
2 new trial concepts identified
based on our research, which we’re now working to bring to fruition.
Research advances | 2022
Accelerating better treatments
Many pieces are now in place to increase the number, pace, and quality of new clinical trials.
Our investments to date, and the unfailing generosity of the many supporters who make our work possible, are bringing about a rapid expansion of the treatment toolbox for patients whose tumors can’t be controlled with surgery and radiation.
The clinical research milestones highlighted above and many more on the horizon are facilitated by two critical new elements we added to our therapy acceleration efforts in 2022:
Chordoma Foundation Labs, through which we can nimbly pursue promising therapeutic concepts, enable better clinical trials by identifying potential predictors of response, and identify drug combinations that could have synergistic efficacy or overcome mechanisms of drug resistance.
Clinical Trial Assistance Program, which reduces the financial burden of trial participation and allows trials to progress faster; already it enabled the first stage of the Foundation-supported cetuximab trial at MD Anderson Cancer Center to complete enrollment significantly ahead of schedule.
At the same time, we invested in various multi-omics and immunology-focused projects to continue stoking discovery of new therapeutic targets that will open the door to the next wave of treatments.
(Photo: clinical trial participant Todd Balf and family)
Key research stories
In 2022, we saw encouraging progress in each of our priority research arenas including brachyury drug discovery, drug repurposing, immunotherapy, pediatric chordoma research, and more.
We also contributed in various roles — author, collaborator, and resource and funding provider — to five peer-reviewed publications, including one representing the largest catalog of chordoma’s potential therapeutic targets to date. A full list of publications resulting from our work is available here.
Together, these tell the story of a robust international research community united in our efforts to understand and ultimately solve chordoma. We're deeply grateful to grantees and collaborators for standing with us in this quest.
Comprehensive map of chordoma's vulnerabilities
A landmark paper revealed numerous potential therapeutic targets for chordoma.
Avenues to maximize chordoma research
In a review article we presented ideas to efficiently identify more effective and personalized treatments.
Bringing immunotherapy to chordoma
We funded two new studies aimed at uncovering how chordoma tumors interact with the immune system.
Coordinated strides for pediatric patients
Generous new investments by families affected by this disease are paving the way for progress.
Achievements from Chordoma Foundation Labs
Posters at a leading cancer research meeting exemplified the capabilities of and progress from our lab.
Major milestone in brachyury drug discovery
Our grantees achieved something once thought to be improbable: they developed chemical compounds capable of binding to brachyury.
Education and resources | 2022
Serving the global chordoma community
Wherever you are in the world, we're here to support you in your experience with chordoma. In 2022, we broadened our resources for patients and caregivers from outside the US, including fully translating our new website into six languages, launching a new Chordoma Community Map, and adding six new volunteer Ambassadors: Erica de Oliveira Rebouças (Brazil), Amandine Saly-Giocanti (France), Cesare Carminati, Federica Monti, and Francesca Romana Lacroce (Italy), and Antonio Bonafonte (Spain).
(Photo: Cesare Carminati)
Improving survivors' quality of life
Our Chordoma Survivorship Initiative supports the overall health and wellbeing of chordoma patients and families beyond the initial diagnosis and treatment period.
In 2022, we expanded our suite of resources to include in-depth information on side effects experienced based on tumor location:
Education and resources | 2022
Celebrating the return of our community conference
In October, we held our Chordoma Community Conference at NYU Langone Health, where attendees heard research and treatment updates, gained new skills for improving quality-of-life issues, and participated in a lively Q&A session with experts. After pausing our in-person gatherings for several years, it was wonderful and energizing to (re)connect with more than 100 patients and caregivers, physician and research partners, and other supporters.
We also launched a new events calendar, where you can find upcoming support groups, webinars, conferences, community fundraisers, and more.
(Photo: Sharon Berlan, Sue Brenneman, Irene Badura, and Kris Stahl)
Our team | 2022
Building our bench
In 2022, we focused on increasing capacity in Chordoma Foundation Labs with the addition of our first two bench scientists: Nindo Punturi and Lee Dolat, PhD. Each day, they work side by side to uncover new possible therapies for chordoma.
In addition, chordoma survivor Kaitlin Slepian joined as our Patient Engagement Specialist.
We also added to our Board of Directors: Leslie Adler, CPA, who brings more than 40 years of accounting experience, and Megan Stewart, who has a background in patient advocacy. Megan Stewart also became chair of our Community Advisory Board, to which we also added Irene Badura, Noreen Potempa, and Kaitlin Slepian.
Huge thanks to each member of our staff, Board, and advisory boards for the talent and dedication they bring to our mission.
(Photo: Scientist Lee Dolat, PhD)
Financials
Thanks to the support of around 2,000 donors, the Foundation ended 2022 in our strongest financial position to date, and poised to make significant investments to scale up Chordoma Foundation Labs, launch new clinical trials, and bring the first brachyury drugs to fruition in the years to come.
Our 2022 IRS Form 990 can be found here; audited financial statements are available here.
Revenue
$4,886,250
Expenses
$3,088,769
Net assets, beginning of year
$4,398,031
Net assets, end of year
$6,246,204
Testimonial
Taking action | 2022
Patient-powered progress
In 2022, soon after being diagnosed with lumbar chordoma, Lauren Mulholland found the Chordoma Foundation — and a strong will to contribute to our mission, even in the midst of great personal adversity. She decided to host a virtual fundraiser to support the launch of Chordoma Foundation Labs, setting a goal of $30,000. Incredibly, Lauren and her network soon surpassed that goal by a factor of ten, raising nearly $300,000!
Their efforts were instrumental to our ability to establish our lab in its first year, and underpin many of its early successes.
"I wanted to be part of the solution — and to do so through an organization that is committed to moving very quickly," Lauren says.
We’re in awe of her act of generosity, and so thankful to her and others whose fundraisers are making an outsized impact on our work.
Taking action | 2022
Dollars raised by fundraisers
Patients, caregivers, and friends who fundraise for the Chordoma Foundation are helping us transform the treatment landscape and serve the people who depend on us.
This year, our community fundraisers hosted half marathons, birthday parties, email campaigns, and much more. We're sincerely thankful for their commitment and willingness to enlist the generosity of their networks to benefit our mission.
(Photo: Steven Mandel and Team Chordoma)
Donors
We sincerely appreciate every gift, and everyone whose generosity is helping to bring about a better future for those affected by this disease. Expand each section below to view the individuals and organizations whose gifts propelled our mission forward in 2022.
It is 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 above we apologize and we are eager to make them right. We welcome you to contact us at development@chordoma.org with any questions, comments or corrections.
*Indicates a payment on a pledge made in a prior year
Take action
Every gift accelerates cures
Together, we’ve already changed much of what it means to face chordoma. Yet the pressing need remains for better treatments. Today, our sights are set on treatments that don't just slow the disease down, but:
- Shrink tumors,
- Prevent recurrence,
- And preserve patients’ quality of life.
If we all give what we can, these new therapies are years, not decades away. To realize this vision, donations are needed today to enable immediate next steps like scaling up the capacity of the lab, partnering with companies to advance development of brachyury drugs, initiating new clinical trials, expanding our Clinical Trial Assistance Program, and more.
Thank you for providing a real reason for hope for everyone facing chordoma.
(Photo: Madison Jones)
Testimonial