During this one-hour webinar, Lisa Ruppert, MD, a physiatrist and cancer rehabilitation expert at Memorial Sloan Kettering Cancer Center, and Justin Brown, MD, a reconstructive neurosurgeon at Massachusetts General Hospital’s Paralysis Center talked about the causes and symptoms of mobility issues in chordoma and how to manage them. Continue reading
Achievements stemming from our recently completed ALL IN campaign have given us much to look forward to, and much to … Continue reading
Kaitlin thought her treatment had to come before any of her own desires. But one member of her care team changed that perspective. Continue reading
In 2017 we launched our ALL IN campaign: an ambitious $16M initiative aiming to seize extraordinary opportunities in chordoma research … Continue reading
Behind Noah’s incandescent smile was a painful journey: when he was just 20 months old, he was diagnosed with chordoma, an extremely rare cancer that’s even more rare among kids. Continue reading
For Mike Queensland and Kimberly Ochs, parenting with chordoma has been a lesson in letting go of control, learning to assess which challenges and opportunities they can take on, and empowering their loved ones to offer support. Though their families and experiences are different, many of their tips for navigating chordoma while parenting are the same. Continue reading
Life’s curveballs — whether rare like chordoma or universal like a global pandemic — have a way of revealing who we are and what we’re capable of. Continue reading
Each year, members of our community dedicate their birthdays to the Chordoma Foundation with virtual fundraisers, collectively raising many thousands of dollars to advance chordoma research and support patients. We invite you to join this committed group of birthday fundraisers — it’s a piece of cake. Continue reading
On July 22, a panel of chordoma experts came together for a live, 90-minute webinar to answer questions about chordoma care and treatment from more than 100 patients and caregivers. A virtual adaptation of one of the most popular sessions at our annual Chordoma Community Conferences, it was the third webinar in our 2021 Virtual Chordoma Community Conference Series. A recording of this session is now available on YouTube. Continue reading
For Alex Casanave, Julia Lisena, and Emily Sommer, the journey from diagnosis to survivorship was different, but it led them all to support other young patients and families through our Peer Connect program, as Peer Guides (Alex and Julia) and trainees (Emily). Continue reading