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
For more than three decades, internationally renowned neurosurgeon Dr. Chandra Sen, the Bergman Family Professor of Skull Base Surgery at NYU Langone Health, has provided expert surgical care to patients with chordoma and other skull base tumors. Now, Dr. Sen – a longtime member of the Chordoma Foundation’s Medical Advisory Board – has assembled a team of researchers at NYU Langone to join him in a new initiative to advance chordoma science. Continue reading
On June 2, we hosted the second webinar in our 2021 Virtual Chordoma Community Conference (CCC) Series: entitled Dealing with cancer-related fatigue. Fatigue is an extreme feeling of tiredness or lack of energy not caused by a specific activity, and it is one of the most common side effects of cancer treatment. From responses to our ongoing Chordoma Survivorship Survey, we know that nearly 60 percent of chordoma patients and survivors have experienced fatigue since being treated. Continue reading
Alicia Jeffreys was diagnosed with chordoma on her 28th birthday. Despite a long, challenging road, her uncommon story has a happy ending. Continue reading
We know that chordoma is a tricky adversary. So when a recent clinical trial testing a therapeutic vaccine came back with unsatisfactory results, we were disappointed, but wholly undeterred. After all, scientific progress is almost never linear — and perseverance is the name of the game in this community. Continue reading