I’d been having intermittent tailbone pain for quite a while. “My clothes hurt,” I told my general...
“I can help people find a way through this”: Steve’s Uncommon Story
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Uncommon Stories
Together, we can find hope and strength
Our welcoming and supportive community of patients and their loved ones have shared what they’ve learned throughout their journeys so that you can know what you might expect throughout your own. Below you will find the Uncommon Stories of people who are determined not to let chordoma define them.
You are not alone. You can give hope to others in the chordoma community by sharing the story of your own journey. Joined together in our Uncommon Cause, we can find the hope and strength to continue our search for a cure.
“Don’t let this disease define you”: Angelo’s Uncommon Story
In 1995, I remember waiting in my wife’s car while she shopped for Christmas gifts, and I was not...
Blessed to have found a chordoma expert: Emily’s Uncommon Story
In October 2021, I went to an ENT doctor because I was feeling dizzy often. He decided to do a...
Grateful for connections and information: Jessica’s Uncommon Story
Almost five years ago, at the age of 25, I began waking up regularly with excruciating headaches....
I had a tumor my doctor had never heard of: Melissa’s Uncommon Story
I was diagnosed with my chordoma at an ER visit for a headache and shooting pain down my arm, in...
The world shifted under my feet: Elizabeth and Justus’s Uncommon Story
After a huge growth spurt, we noticed our 16-year-old’s shoulder was quite a bit higher than his...
We are more than our cancer: Adriane’s Uncommon Story
We’re honored to bring you this Uncommon Story from Adriane Rothstein, a 15-year chordoma survivor...
The good moments will come again: José Enrique’s Uncommon Story
José Enrique knows how to look a challenge in the eye: The former Premier League soccer player...
You don’t have an expiration date: Jonathan’s Uncommon Story
Harvard Cyclotron Laboratory, 1983 I was diagnosed with chordoma almost 40 years ago: late in the...
Gem and Pio’s Uncommon Story: Life can still be beautiful
It was 2014, and Pio was three and a half years old when he started getting migraines. Usually...
Juliana’s Uncommon Story: The importance of connecting with others
The beginning of my journey with chordoma happened after I had some blood work done, which...
Lindsay’s Uncommon Story: The bumpy road of long-term survivorship
Part one of Lindsay’s Uncommon Story, published in 2013, can be found here. In May 2003, I...
Allen’s Uncommon Story: Remembering my wife, Tiffany
Our chordoma story began when my wife, Tiffany, began noticing a discomfort in her sacral area....
Kaitlin’s Uncommon Story: Chordoma led me where I was meant to be
When Kaitlin Slepian was a senior in high school, she had an ordinary wish — to attend prom. But...
Welcoming the unwelcome guest: Parenting with chordoma
As parents, particularly parents of small children, we’re filled with hopes and dreams – for their...
Dani’s Uncommon Story: It’s okay to feel overwhelmed
I was diagnosed in January of 2019 when I was 21 years old in my last semester of college. I had a...
Carlie’s Uncommon Story: Finding joy in the small things
I was diagnosed with chordoma in April 2017 while I was still finishing up college. I was...
Kate’s Uncommon Story: I’ve met wonderful people across the world
In June 2021, at the age of 25, I underwent an 11 hour surgery to remove a large tumour from my...
Georgia’s Uncommon Story: The best doctor in the world
I was first diagnosed with sacral chordoma in 2008 accidentally during an MRI. The tumor was a big...
David’s Uncommon Story: We knew we were in the right place
I was extremely lucky when I was diagnosed with a clival chordoma! Unfortunately, I suffer from...
Craig’s Uncommon Story: A patient needs to be vigilant
My journey started in 2019 when I came down with the flu. My primary doctor sent me to get a chest...
Barbara’s Uncommon Story: Nothing the surgeon had seen before
About 15 years ago I experienced terrible pain in the middle of my back, mostly at night. Physical...
James’ Uncommon Story: Support from many sources
I have been a sacral chordoma patient since 2019. I live in New Jersey and am 89 years old. In...
Five tips from young survivors
Moving forward after chordoma If having chordoma is like being a wombat — a rare species seldom...
“Overachieving” survivor beats rare cancer diagnosis
Alicia Jeffreys with husband, Darrell, and their daughters Mikayla, Kaia, Amaya, and Ava It was...
An unexpected champion: Jeff Schilling’s story
4/15/22 — A message from our Executive Director, Josh Sommer: All of us at the Chordoma Foundation...
Iron-maniac: Chordoma Champion racing 10 Ironman triathlons in 10 days
After a heroic battle, my uncle Mike lost his life to chordoma. No one should have to go through...
Experiencing survivorship from the co-survivor’s perspective
Chordoma doesn’t just affect the individuals diagnosed; it also affects their loved ones. If...
The quietly powerful gifts of Michael Torrey
11/18/21 — A message from Executive Director, Josh Sommer: We were enormously saddened to learn...
Susie Rinehart’s Fierce Joy
“I decided to choose joy over fear, and brave over perfect.” – Susie Rinehart, chordoma patient...
Todd Balf’s Complications: A book about recovery, setbacks, and, ultimately, hope
“We’re all going to be different after chordoma than before. The idea with recovery is to get back...
Going ALL IN – The Mainey’s Story
Before Chuck Mainey was diagnosed with chordoma in 1999, he and his family — like many affected —...
Krista’s Uncommon Story: New perspectives
I was 18 when I was diagnosed with a clival chordoma. At the same time, I also found out I was...
Donna’s Uncommon Story: Listen to your body
Two years ago I was attending college at EMU in Ypsilanti, Michigan. Sitting in classes became...
Susie’s Uncommon Story: Fierce Joy
In 2016, I was a champion ultrarunner, yet I was given 3 months to live with a chordoma tumor...
The One in a Million Benefit: Helping give others with chordoma a future
Chordoma caregiver and fundraiser Noreen Potempa gave an inspiring talk at our Chordoma Community...
A Patient Perspective: Susan Garbett
Chordoma survivor and advocate Susan Garbett gave an impassioned talk during our Chordoma...
The hope I have is because of you
As I write today, I am twelve years distant from my initial diagnosis of chordoma. At the time,...
Hannelie’s Uncommon Story: Knowledge, wisdom, patience, and strength
Good day everybody. My husband, Ampie, was diagnosed in November 2016 with a huge sacral chordoma....
Carolyn’s Uncommon Story: Ask for help, because it will come from everywhere, even places you didn’t expect
In early 2018, my husband and I bought a swing set for our two young children. In late March 2018,...
Join me in unlocking progress toward better treatments
I’ve always been an optimist. It’s just who I am. As a retired kindergarten teacher and...
Sydney’s Uncommon Story: For anyone reading this. You are not alone.
I was 15 when I was diagnosed with a clival chordoma and my only symptom … I snored. I then...
Veteran cycler and chordoma survivor advance cutting-edge chordoma research at Dana-Farber Cancer Institute
In their nearly 30 years of friendship, Todd Balf and Chris McKeown have cycled thousands of miles...
Chordoma is a solvable problem. Join me in being part of the solution.
I was a high school senior when chordoma blindsided me. It hit me at a point in my life when most...
Hailey’s Uncommon Story: Be a warrior, not a worrier
I was diagnosed with cervical spine cancer at the age of seventeen. It changed my world forever. I...
Together we can solve chordoma
Nearly six years ago, we heard the words that would completely change our lives: “you have...
Dorothy’s Uncommon Story: Be your own advocate
My story with a clival chordoma (skull based tumor) started 13 years ago. I began having...
An experimental treatment changed the life of a courageous young chordoma survivor
Please accept marketing-cookies to watch this video. Watch this video on YouTube » As the youngest...
Maureen Schroer: Helping others to find their silver lining
It was an average Friday in March of 2012, and Maureen Schroer was rushing through her typical...
Surprise birthday celebration brings together friends, family, and fire-breathing belly dancers to raise money for chordoma research
It wasn’t a typical birthday party. When Daniel Kalenov arrived for a celebration of his 40th, he...
Grateful for life-saving support, couple embarks on mission to champion research for others
Michael and Noreen Potempa had just retired and were looking forward to the next chapter in their...
In Cameron’s memory: Family continues to raise money and awareness after chordoma takes their young son
Cameron Riccomini was nuts about sports: his favorite birthday party was one where he and his...
After surviving two major hits, athlete runs to raise money for the chordoma community
2012 was a horrible year for Steve Mandel, his family, and friends. In March, Steve was nearly...
You can’t let a disease run your life
Jeff Schilling credits his wife, Erin, for the philosophy he lives by. “She always drums it into...
Scott’s Uncommon Story: Having a great outlook on life and keeping yourself busy is 3/4 of the battle
My journey with chordoma started on October 29, 2004. The doctors in my state give me a 50/50...
European liaison expands Foundation’s reach overseas
When Hans Keulen was first diagnosed with skull base chordoma in 2009, he searched for...
Joel’s Uncommon Story: We are moving closer to a cure
It was a long road to recovery after I was diagnosed with chordoma in 2009. Following surgery to...
Jessica’s Uncommon Story: If you stay positive through your fight, you will be an inspiration for everyone else!
I was diagnosed in June of 2009 at the age of 26! I had been complaining for over ten years of...
Jeremiah’s Uncommon Story: We are determined to beat this cancer
On December 19th, 2013 I started to have health complications which included severe double vision,...
Final gift creates a legacy of hope
Bill Victor arranged to donate his chordoma tumor to the CF Biobank upon his death. This amazing...
Survivor teams with fellow cyclists to raise funds for foundation
For most of his life, Chris Kuhn wasn’t a cyclist. At age 38, he still preferred distance...
Adolf’s Uncommon Story: I am so excited about the possibilities for future treatment
In 1998, I developed double vision while visiting with my wife’s family in Mississippi. Several...
Lindsay’s Uncommon Story: I gained a tremendous sense of self
Like most single, young women living in a big city on their own, I couldn’t foresee anything...
Stephanie’s Uncommon Story: We were able to meet this situation head on … and beat it
Dad was diagnosed in July 2012 when an MRI identified a tumor on L1 – L2. I reached out to the...
Jeff’s Uncommon Story: Clival chordoma
I was diagnosed with chordoma of the clivus in December 2016. I had the tumor for at least nine...
Gary’s Uncommon Story: Remaining positive while dealing with recurrences
My chordoma story started in 2000 when I felt a pain at the bottom of my back while sitting. My...
Share your uncommon story
You can give hope to others in the chordoma community by sharing the story of your own uncommon chordoma story.