Chordoma Foundation

You’re not alone. We’re on your team. Meet the members of #TeamChordoma

“I know that the race will be jovial and meaningful because it will be a connected experience for all of us. Whether you’re pounding the pavement, cheering us on, or watching from afar there is incredible strength and comfort in being part of a group who truly understands and shares this very specific journey.”

– Christina Ciocca Eller, #TeamChordoma 2019, child of a chordoma patient

A brief history of #TeamChordoma

Steve Mandel, #TeamChordomaSeven years ago, Steve Mandel was recovering from the worst year of his life. After surviving a near-fatal car accident by a hit-and-run driver in New York City, the doctors overseeing his rehabilitation discovered a chordoma at the base of his spine. Feeling lost, Steve looked around for answers and found the Chordoma Foundation. With the information and support he received from the Foundation, Steve connected with a qualified care team, had a successful surgery, and got back on his feet.

Shortly thereafter, Steve set an audacious goal. He would return to his pre-accident/pre-cancer physical condition and do it while helping the Chordoma Foundation in any way he could. For his first challenge, in 2014, Steve ran a half-marathon. He invited his two best friends to join him at the race in Miami and turned it into a fundraising event. #TeamChordoma was born.

In the years since, thanks to Steve’s energetic leadership, #TeamChordoma continues to grow. Last year, more than 50 people ran, and in the past five races, the Team has raised an incredible $300,000 for chordoma research and care. Next month, the Team will come together again at the Brooklyn Half Marathon on Saturday, May 18th and they’re inviting YOU to join them for a post-run New York City celebration!

Join Team Chordoma for a Celebratory Reception in New York City on May 18

WHAT: 6th Annual Chordoma Foundation Half Marathon Fundraiser

WHEN: Saturday, May 18th at 8:30 PM

WHERE: Hill and Bay Restaurant (581 2nd Avenue, New York, NY 10016)

Tickets are $100 and include an open bar, dinner, live music, and more.

 

More than just a group of runners

The members of #TeamChordoma are connected in a way that goes far beyond physically running the race. Survivors, friends, relatives, and researchers all come to the team with their own stories and journeys, but find common ground in the shared experience of dealing with chordoma and working to eradicate it.

We recently caught up with a few of this year’s runners to find out what #TeamChordoma means them. Here’s what we learned.

Emily Sommer | Chordoma survivor

Emily Sommer, #TeamChordoma

“When I first joined [#TeamChordoma], it was to prove to myself that my body belonged to me again, not to cancer. Learning that I could still train and compete – that cancer had not stolen those things away from me – was amazing. It made me feel proud and resilient. But even more gratifying was the fact that by meeting my own goal, I was helping to support the incredible work of the Chordoma Foundation and, hopefully, help other people like me. ”

This is Emily’s third year running with #TeamChordoma. Emily is a self-taught software engineer who works at Etsy and recruits a different crew of friends to run with her and #TeamChordoma each year. Emily was first diagnosed with chordoma in 2014, the week before her 30th birthday. After undergoing a year of treatment which included four major surgeries, five rounds of chemo, and two months of radiation, she is now cancer free. Emily runs with #TeamChordoma because she values the opportunity to keep pushing herself forward, and loves that it allows her to contribute to a cause she believes in.

You can learn more about Emily and support her efforts with #TeamChordoma through her online fundraising page and her blog.

Stephen Capuzzi | Chordoma researcher and friend of a patient

Stephen Capuzzi, #TeamChordoma“It is a very powerful experience to see all of these people who are dedicated to a singular mission – getting new therapies developed for this disease. As a research scientist, I don’t get to meet many of the patients who ultimately benefit from my work so it’s really nice when something is able to bridge that gap and bring us all together. For me, that something is #TeamChordoma.”

This is Stephen’s second year running with #TeamChordoma. When he first joined he was a PhD Candidate at UNC-Chapel Hill, working under Professor Alexander Tropsha at the UNC Catalyst for Rare Diseases. After learning that his brother Christopher was close friends with #TeamChordoma Captain Steve Mandel, he quickly got involved. In addition to running, Stephen also helped spearhead a collaborative drug development initiative between UNC and the Chordoma Foundation, which is still ongoing. Today, Stephen works for Vertex Pharmaceuticals in Boston.

Support Stephen’s efforts with #TeamChordoma through his online fundraising page.

Christina Ciocca Eller, Mariana Ciocca, and Henry Ciocca | Children of a chordoma patient

Ciocca Family, #TeamChordoma“We never would have signed up to run a race if it was not for the Chordoma Foundation. But when we read about it in the newsletter, we knew we had to. The Foundation means so much to us and we wanted to be a part of helping it grow, so it can help other families like ours. Our dad was always the glue who brought us kids together, so the fact that we’re still doing things together as adults is really a testament to his parenting. Even though it’s been ten years since he died, it feels like he’s still with us when we’re training – a cosmic cheerleader reminding us to give it 100 percent, stick together, and not cut corners.”

– Mariana Ciocca, #TeamChordoma 2019, child of a chordoma patient

This is the Ciocca siblings’ first year running with #TeamChordoma. In 2008, their dad, Hank, lost his three-year battle with chordoma. Last spring, they hosted their own fundraising event called Swing For a Cure which raised $30,000 for the Chordoma Foundation. The event honored their dad on the 10th anniversary of his death. Friends and family came together to eat, drink, and show off their golf swing at a golf simulator bar in Manhattan. Afterward, the siblings decided they wanted to continue supporting other Chordoma Foundation fundraisers as well. It was Henry who saw the #TeamChordoma listing in the e-newsletter and convinced his sisters and wife to join him in the run, pointing out how much their dad would have loved it. The training has given the siblings a chance to spend more time together while reflecting on and reconnecting with memories of their dad.

Support the Ciocca’s efforts with #TeamChordoma through their online fundraising page.

 


 

If you are interested in participating in or supporting #TeamChordoma in the upcoming Brooklyn Half Marathon or hosting your own fundraising event on behalf of the Foundation, please contact me at daniel@chordoma.org. I would love to help.



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