As I write today, I am twelve years distant from my initial diagnosis of chordoma. At the time, the news landed like kryptonite, exploding my well-laid plans and setting me down an unexpected path.
The journey has, without question, been a difficult one. But it has also been punctuated with signposts of unexpected joy, rich new relationships, and profound life lessons. Twelve years, four craniotomies, three recurrences, and one experimental therapy later, I’m still here – enjoying the sweetness of life. I’ve been blessed to not only endure, but to thrive, thanks to my faith in God, the tremendous love and support of my wife Sherri and our four children, and the invaluable assistance of the Chordoma Foundation.
Watch Ed’s story
When I was first diagnosed in 2007, very little was known about chordoma. It was difficult to figure out what to do or where to turn. Fortunately, as Sherri and I cast about for guidance amid the turbulence, we discovered the Chordoma Foundation. It became a critical life raft for our family, and we were quick to pull ourselves on board. And beyond the support we got, the Foundation’s ability to pull together the brightest scientific minds to tackle chordoma was impressive, and the pace of progress encouraging.
In the years since, Foundation-led researchers have cut through the fog around chordoma, taking a disease that was virtually ignored and turning it into a model of progress and hope. Today, more than 350 investigators at leading institutions around the world are studying chordoma and testing new treatment options. Together, they have built a pipeline of promising therapies with the potential to benefit not only chordoma but other cancers as well.
At the same time, the Foundation continues to offer crucial support to patients like me, walking with us as we navigate this difficult path and helping ensure we get the right treatments at the right time in the right place.
I, and others like me, owe an enormous debt of gratitude to the Chordoma Foundation for helping us live as well as we possibly can, and giving us hope – real hope – for a cure.
The hope we have is because of you. Your generous support is what keeps the Foundation afloat and enables us to continue exploring new solutions for chordoma. Please join me in keeping the progress going by making a gift today.
Together we will win. Together we will find a cure.