“The Foundation has made it okay for every patient to speak up and get a meaningful response. They also vet treatment teams to help ensure everyone affected has the opportunity to get the right care. The lack of these things used to give chordoma patients and families bad odds, and the fact that – today – not only is research and treatment improving but the newly diagnosed can easily find good information is reassuring, to say the least.”
– Michael Torrey, clival chordoma patient
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.
At the time, there was no Chordoma Foundation and little in the way of formal patient networks. Information about chordoma on the internet was sparse, and what did exist was either dated, frightening, or otherwise unreliable. But with a young family to care for, Michael was determined to find a solution and come out stronger.
He soon connected with a small group of patients and families through an informal online support group and, together, they started organizing. A problem-solver by nature, Michael began by gathering a list of unanswered questions about chordoma treatments and care and planning a meet-up with two other support group members to discuss them. Those individuals, Bill Dorland and Johnny Nelson, were both at the University of Maryland at the time—Bill as a physics professor and Johnny as a student. Michael used one of the breaks in between his proton radiation treatments at Massachusetts General Hospital to travel down to Maryland and meet them in person, sitting down over coffee to discuss the changes they wanted to achieve for chordoma patients.
Michael Torrey makes things happen. Before there was a Chordoma Foundation, and from thousands of miles away, he found Johnny and me and brought us together to talk about papers he and Johnny had found on EGFR inhibition. It is one of my first and fondest memories of the chordoma community. Michael and Johnny wanted to spin that early knowledge into clinical gold and well, it’s happened! In the 15 years since we first met, he has continued to work his magic, looking for new angles and supporting everyone who wanted to make a difference. He has always been an inspiring, thoughtful, and effective leader, and a great friend to my family and me.
Not long after, in 2006, Michael traveled to a meeting of the National Organization for Rare Disorders (NORD) where he, Johnny, and Bill linked up with several other families who shared a desire to improve the odds for chordoma patients. One of those families was Josh Sommer’s, then a newly diagnosed patient who would go on to co-found and lead the Chordoma Foundation.
At the time, Michael had already had three surgeries and was anxious about the impact his ongoing health struggles might have on his wife, Cheryl and their two daughters. He turned to his friends in the online community for support and knowledge, eager to learn from their experiences and share tips and tricks on everything from finding the right doctors and treatments to dealing with quality of life issues.
Michael has always believed in the possibility of improving the outlook for those affected by chordoma. Over the years his optimism has rubbed off on many others, including me. But he doesn’t just believe; he acts, and he organizes, and he agitates to make that belief a reality. Since day one, Michael has quietly and without fanfare been one of the Foundation’s most thoughtful, generous, and consistent supporters. Without him, the Foundation would not be what it is today.
When the Chordoma Foundation started in 2007, Michael became one of our first donors and has contributed generously ever since, both in support of specific research initiatives such our cell line prizes and to help the Foundation build out its operational capacity and patient support efforts. Guided by a belief that there is strength in numbers when it comes to a rare disease like chordoma, Michael has been particularly passionate about bringing together the chordoma community. Close to home in Southern California this motivated him to help organize several meet ups for local patients. He also served on the organizing committee for many community conferences, connecting personally with many patients and families over the years to offer his mentorship, support, and friendship.
One particularly meaningful connection Michael made early on was with Justin Straus‘s family, a young chordoma patient from North Carolina whose parents, Heather Lee and Steve Straus, also played a major role in the formation of the Chordoma Foundation. Working with Heather to organize the first Chordoma Community Conference in 2008, Michael was taken by Justin’s story: the bravery and maturity with which he confronted his disease since the age of five, and his determination to be a part of solving it. To honor Justin, in the lead up to the Community Conference and concurrent International Chordoma Research Workshop, Michael put up matching funds for a research grant in Justin’s name with the idea of enabling researchers to quickly follow up on ideas stemming from the workshop. Many in the Lee-Straus Family’s network and the broader chordoma patient community rose to the occasion to meet Michael’s challenge, ultimately providing funding for one of the Foundation’s first, and pivotal, research investments.
Later, as Justin’s disease progressed and he ultimately passed, Michael continued making donations to the Foundation in honor and then in memory of Justin, and formed a lasting friendship with Heather and Steve.
Michael’s commitment and generosity go well beyond donations. He has been an active and regular participant in Chordoma Community meetings and peer support, always encouraging the Foundation to stretch its capabilities. He and our son Justin were taken with each other from the start – maybe because of their equally large personalities, humor, and sense of responsibility for others. Justin had a way of sensing, seeking, and bonding with special people and Michael is indeed very special. When Justin was quite ill shortly before he died, Michael sent him signed memorabilia from two of Justin’s favorite athletes, choosing to remain anonymous rather than seeking appreciation. In fact, we only found out that Michael was behind this gift through Justin’s persistence in uncovering the source. Michael has a way of tuning into others’ needs without seeking anything in return. It is not hyperbole to say that the Foundation is better today for Michael’s early and formative gifts of time, talent, and treasure. He is the rare blend of a great benefactor and a person who touches other’s souls. Justin was and we are eternally grateful to him.
Through 17 years, multiple surgeries, radiation, and various clinical trials and therapy regimens, Michael has remained a fierce fighter for better options and outcomes for the chordoma community. His quiet yet steadfast philanthropy over the years has helped improve the outlook for thousands of patients and families affected by chordoma and continues to drive meaningful advancements in research and care.
While Michael and his family have had the chance to meet several individuals whose lives have been impacted by their support, countless more benefit every day. Because of people like the Torreys, so much progress continues to be made in chordoma, and we cannot overstate our gratitude for their generosity.