Over the past dozen years, this community has transformed chordoma from a completely neglected disease into one for which extraordinary advances are being made in research and care, and from a lonely and bewildering journey for those affected into one of support, connection and hope for many.
Now, we are entering a new phase, and I wanted to take a moment to share some important news.
Thanks to a confluence of recent advances, for the first time, there is now a credible path to making chordoma a manageable disease — to treatments that don’t just slow the disease down, but that have a real chance of enabling patients to get on with their lives.
Most notable among these advances, researchers funded by the Foundation have recently made a major breakthrough that provides line of sight to the first drugs against brachyury — the key driver and greatest vulnerability of chordoma (its “Achilles’ heel”). Much evidence suggests that such drugs could provide the best chance of effective, if not curative, treatment for chordoma, and could also be beneficial for patients with other cancers in which brachyury is implicated such as breast, colon, lung, and prostate cancers. With adequate investment, these treatments could reach clinical trials within the next four to five years.
In the meantime, research has revealed a number of existing drugs which have the potential to help those in need of better treatments sooner; six are already in clinical trials and, based on recent discoveries in the lab, we foresee opportunities to initiate at least four more strongly-justified clinical trials in the next two years.
The upshot is that we now not only have hope for helping patients diagnosed in the future, but a real chance to change outcomes for those facing chordoma today.
This is an opportunity that doesn’t come along often in the fight against cancer. And it’s an opportunity we know we must seize. If ever there was a moment to swing for the fences — to go all in — this is it.
To that end, I’m excited to share that we have launched the ALL IN campaign which aims to raise the funds needed to realize the opportunity created by these recent breakthroughs.
The need is $16M, and, thanks to the generosity of many in this community, we’ve already raised more than $11M, including more than $2.5M in just the past two months! Not only does this create enormous momentum, but these funds are being used to leverage even greater investments from other organizations.
This alone is a victory, but we need to close the gap, and every donation gets us closer.
Thankfully, a generous member of our community has recently pledged to match all gifts up to a total of $500K, which means that every donation made right now will be doubled!
If you have recently contributed, thank you so much!
If you are in a position to make a year-end contribution, we would be truly grateful for your support.
- You can make a donation here or by mailing a check to the Chordoma Foundation at PO Box 2127, Durham, NC 27702.
- For other giving options, click here.
- For donations outside the US, click here.
- If you have even an inkling of interest in holding a fundraiser to support the ALL IN campaign, we are here to support you! You can reply to this email or reach out to my colleague Daniel Baroff at (919) 809-6779, ext. 118.
And, if you have any other ideas or know others who may be inspired to join us in this quest, we’d love to hear from you and welcome the chance to talk with anyone about our work.
In any case, thank you for helping us get to this exciting moment. It has been an incredible journey thus far and because of what this campaign is making possible it looks like there is a very real chance the next few years will bring the first effective therapies for this disease.
For me — and I know for many who have been affected by chordoma — this is an extraordinarily hopeful prospect. I appreciate you helping to make it possible and look forward to keeping you posted as we forge ahead.