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A personal health update from Executive Director Josh Sommer

"Ive drawn strength, inspiration and great practical advice from a number of fellow patients who have traveled down this path before me."

Community and connection

Update (10/17/2022): I’m thrilled to report that I’m back in action after a successful surgery and recovery. Longer story here. In the aftermath of a recurrence, our shared mission takes on a new level of significance for me, and I sincerely thank you for all that you’ve done and continue to do to give patients like me a real reason to hope that we can outrun this disease.

Sixteen years ago, as an 18-year-old college student, I unexpectedly joined the small and not-so-sought-after club of people who have faced chordoma. I was lucky to receive excellent medical care, which resulted in the complete removal of my tumor. Since then, I’ve enjoyed many more years of good health than I had imagined I would get, found a calling in my work at the Chordoma Foundation, and started a family. Life has been really, really good.

However, my most recent MRI dealt a setback: a small, new tumor showed up near the site of my original tumor. Thankfully, I’ve gotten invaluable guidance from several leading chordoma specialists, and, in short, their recommendations all converged on getting it out sooner vs. later. So, next week, I’m going to have surgery to remove it.

Though I’d clearly rather not be in this position, I feel well-prepared and well-supported to take on surgery. And just as I did last time around, I’ve drawn strength, inspiration and great practical advice from a number of fellow patients who have traveled down this path before me.

As I head into this next challenge, I wanted to take a moment to thank the many people who are making the outlook for patients like me considerably brighter. The numerous researchers and physicians seeking to understand chordoma and find better ways to treat it. The companies working with us to explore or develop drugs for chordoma. The amazing team of professionals at the Foundation working constantly to advance our mission, plus the phenomenal Board of Directors, advisors and volunteers backing us up. And the thousands of individuals, families and organizations whose contributions make it all possible. It all adds up. Every single person makes a difference.

Thanks to you, there’s incredible progress being made. In recent years, research has uncovered several new options for patients with recurrent or advanced disease. There are even more promising treatment concepts approaching clinical trials now. And because of all the groundwork that’s been laid, there’s much more coming down the pike and a much higher ceiling on the pace of progress going forward.

Consequently, there’s every reason to believe that, with continued progress, patients like me have a real chance of outrunning this disease. Certainly, there’s a great deal more work to be done, but it sure does feel a lot more hopeful and a lot less lonely than when I was first diagnosed 16 years ago. And for that I am very grateful.

Assuming surgery goes well, I’ll be back in the saddle by mid-September. After that, I’m excited to get back to work on our mission, which now takes on an even greater sense of urgency for me.

Meanwhile, the Foundation’s capable team continues on, and is here should you need anything.

I look forward to reporting back with an update after surgery, and to continuing to forge ahead together to solve this problem.



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