Author Archives: Chordoma Foundation Team

The Chordoma Foundation works to improve the lives of those affected by chordoma - a rare and tenacious bone cancer - and is leading the search for a cure. Started in 2007 by patients and families determined to create a better future for those affected by this devastating disease, the Foundation offers a suite of services to help patients get appropriate treatment, overcome practical challenges, and get emotional support. To advance the search for a cure, the Foundation strategically initiates and funds research, facilitates communication and collaboration among researchers and drug companies, and supplies the research community with critical biological resources.

2021 Virtual Chordoma Community Conference: Dealing with cancer-related fatigue

Jun 08 2021 by Chordoma Foundation Team

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

“Overachieving” survivor beats rare cancer diagnosis

Jun 03 2021 by Chordoma Foundation Team

Alicia Jeffreys was diagnosed with chordoma on her 28th birthday. Despite a long, challenging road, her uncommon story has a happy ending. Continue reading

Learning from results of three recent brachyury vaccine trials

May 26 2021 by Chordoma Foundation Team

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

“Tomorrow, together”: Chordoma patient’s email sparks 45,000 reasons for hope

May 20 2021 by Chordoma Foundation Team

It was a sunny Easter in Chicago this year, but Mick and Noreen Potempa had another reason to feel warm at their family egg hunt: For the first time since the start of the pandemic, the newly vaccinated couple enjoyed a holiday with four of their grandchildren. Continue reading

Five ways patients can accelerate chordoma research

May 13 2021 by Chordoma Foundation Team

An uncommon level of commitment from the chordoma patient community has been the key driver of new discoveries that are changing the outlook for this disease. There are numerous opportunities for each of us affected by chordoma to fuel research advances that will dramatically improve treatments and outcomes. Continue reading

An unexpected champion: Jeff Schilling’s story

May 05 2021 by Chordoma Foundation Team

Jeff Schilling never expected to be the kind of person who openly shared his experiences with cancer, and he certainly never planned to do it in front of an entire bowling alley full of people.
When Jeff was first diagnosed with chordoma 18 years ago, he didn’t even want to talk about it. At 25 years old, he wasn’t about to let the fact that he had a rare cancer define him or change how people saw him. Continue reading

Iron-maniac: Chordoma Champion racing 10 Ironman triathlons in 10 days

May 03 2021 by Chordoma Foundation Team

When Kenny Brighton joined the Chordoma Foundation in 2019, his off hours were spent in training mode: preparing for a race involving 10 Ironman triathlons in 10 days. Then came the pandemic; race cancellations followed. Rather than let his preparation go to waste, Kenny decided to pivot, taking the event into his own hands — and legs. As we speak, he’s in the midst of a one-man “Ironman x 10” in the balmy Florida beach town where he grew up. Over 10 consecutive days, he’ll run, bike, and swim a mind-blowing total of 1,400 miles. Continue reading

A momentous year for the chordoma community

Apr 27 2021 by Chordoma Foundation Team

The year has started off with a feeling of great momentum at the Chordoma Foundation thanks to an outpouring of support for our recently-launched ALL IN campaign – including more than $3M in just the last few months. Continue reading

NYU launches ambitious new chordoma research program thanks to patient philanthropy

Apr 26 2021 by Chordoma Foundation Team

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

Experiencing survivorship from the co-survivor’s perspective

Apr 22 2021 by Chordoma Foundation Team

Chordoma doesn’t just affect the individuals diagnosed; it also affects their loved ones. If you offer the crucial emotional, physical, financial, or spiritual support that someone with chordoma needs, you are a co-survivor. Continue reading

Chordoma Foundation