Chordoma Foundation

Joel’s Uncommon Story: We are moving closer to a cure

Joel uncommon chordoma story

It was a long road to recovery after I was diagnosed with chordoma in 2009. Following surgery to remove a large clival tumor, I spent four weeks in ICU, underwent radiation treatment and battled with side effects that lasted long after I left the hospital. Having had the benefit of world class surgeons and a superb radiation specialist, I began to consider what I could do to help the broader chordoma community.

After meeting with the founders of the Chordoma Foundation and learning more about their model for advancing research and the progress they were making, I realized that this small organization was going to have an exceptionally large impact. My wife, Shari, and I began providing regular financial support to the Foundation and, in 2011, I joined the Board of Directors.

Several things have particularly impressed me about the Foundation – the incredible research it has sponsored and promoted; the applicability of this research to more common forms of cancer; how the Foundation has become a model for other rare and orphan diseases; and how the Foundation is increasing its commitment to education and outreach to ensure that every patient has the information and ability to make the best treatment decision.

I am excited knowing that the Chordoma Foundation has made remarkable strides toward new treatments that will mean better outcomes for everyone affected by this rare disease. We are making great progress and, together, we are moving closer to a cure.

Joel's uncommon chordoma story

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