When Renée Butler’s oldest son, Seth, was diagnosed with chordoma at age 13, “it was a difficult time for our family,” she recalls. “In the years that followed, the Chordoma Foundation has given him so much support as a survivor. I wanted to do something to say thank you.” Continue reading
Adaptability is a skill we’ve all had to sharpen over the past year; life in a pandemic is anything but business as usual. But coming together to adjust to new conditions and accomplish the improbable is something we in the chordoma community know how to do. So even when COVID-19 put unprecedented roadblocks in the way, Chordoma Champions — individuals who rally their personal network to fundraise for the Foundation, directly supporting research and patient services — forged ahead. Our Champions broke through obstacles none of us could have expected with ingenuity and perseverance. Continue reading
Michael Torrey knows how to build things from the ground up. As the President of Avalon Construction Corporation, he’s spent 43 years creating custom homes that perfectly blend unique design and smart efficiency. So when he was diagnosed with chordoma in 2004, he approached it with a builder’s perspective, systematically researching the landscape and assembling key players to construct the strongest and most supportive framework possible for tackling his rare disease. Continue reading
In the spring of 2019, John Mainey and his family gathered friends and supporters across multiple states for the Warriors Against Chordoma Golf Tournament and Hoops Challenge in Austin, Texas. Both events were held in celebration and memory of his son, Chuck, an athlete and sports fan who battled chordoma for 15 years before losing his life to the disease in 2014. Together, they raised an impressive $20,000 for chordoma research and patient care, an outcome that surprised and delighted the Maineys. Continue reading
Join us in going ALL IN for chordoma by making a gift of whatever you can contribute in these challenging times. Joel and Shari Beckman have gone ALL IN because they see a real chance of permanently changing the course of this disease. And they know that the tomorrows that will be gained as a result — for everyone affected by chordoma — are the most precious gift of all. Continue reading
Chordoma caregiver and fundraiser Noreen Potempa gave an inspiring talk at our Chordoma Community Conference at Northwestern Medicine in Chicago … Continue reading
Five easy steps to start a Facebook Fundraiser Click Fundraisers in the left menu of your Facebook News Feed Click … Continue reading
As I write today, I am twelve years distant from my initial diagnosis of chordoma. At the time, the news … Continue reading
“I know that the race will be jovial and meaningful because it will be a connected experience for all of … Continue reading
I’ve always been an optimist. It’s just who I am. As a retired kindergarten teacher and grandmother of eight, it … Continue reading