Sue J. swims for a cure

As Sue Johnson contemplated how to mark her three-year cancer-free anniversary, she was pragmatic. The chordoma survivor and married mother of three knew she wanted to raise money for chordoma research, but chronic back pain meant she was unable to run or walk one of those common fundraising events.

“I can swim!” Sue realized…and a fundraiser was born. Sue has asked friends and family to sponsor her as she swims 1,000 laps – about 33 miles – at her local pool in the suburbs of Washington, DC. The Army veteran even started a blog (aswimforsue.blogspot.com) so supporters can track her progress. She swims five days a week, and is aiming to complete the last lap on December 16th, the third anniversary of her surgery to remove the chordoma tumor from her lumbar spine. Sue’s goal is to raise three dollars per lap, for a total of $3,000 to go toward  research through the Chordoma Foundation. (To sponsor Sue, visit chord.convio.net/goto/Swim4Sue)

Sue first learned about the Chordoma Foundation after her doctor raised the possibility that the tumor in her lower back might be a chordoma. After several weeks of tests, that possibility became a reality. Sue, who lived in Washington State, went to M.D. Anderson Cancer Center in Texas for treatment. Eventually, when her family moved to the East Coast, she was able to attend CF’s annual Chordoma Community Conference.

“Going to the conference was sobering, but at the same time very uplifting and positive. It really solidified my desire to be involved with the Foundation,” Sue recalls. “I met doctors and researchers, and learned how important information-sharing and collaboration is to making quicker progress in the treatment of chordoma and other cancers. And as someone who had never been involved in fundraising before, it was really interesting to see where your money goes when you donate. That’s why I decided to put myself out there and raise money for the research that the Foundation supports. Otherwise, I figured, it was a waste of a life experience. Besides, I felt like I might explode if I didn’t try to do something for further the cause!”

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Families raise funds in their children’s honor to advance chordoma research

Two families who know all too well what it is like to lose a child to chordoma are doing what they can to help spare other families from a similar fate. In November, the Nemelkas and the Vances held a series of fundraising events to raise money and awareness for the Chordoma Foundation.

The two Utah families met in 2009 when seven-year-old Jared Vance was diagnosed with chordoma and a friend connected them with the Nemelkas, who were themselves battling chordoma with their daughter Anna, diagnosed at age three. Christy and Joe Nemelka helped guide Jaime and Andrew Vance to the best doctors and resources, and the two families grew close as they supported each other through this journey. Unfortunately, both Anna and Jared ultimately lost their battles. At the funerals and in the years since, the couples have been there to comfort each other and provide a source of strength through the grieving process.

This fall, over dinner with Chordoma Foundation Executive Director Josh Sommer in Salt Lake City, the two families pledged to raise $25,000 to fund a seed grant for chordoma research.

Joe Nemelka, who has been racing pigeons as a hobby since he was a child, decided to auction off two of his prized racing birds. “While it is too late to be able to affect our daughter’s life, our family is making the effort over this holiday season to raise money to help find a cure for those who may be diagnosed in the future [with] this dreaded disease,” Joe wrote on the pigeon auction website, noting that all proceeds would go to the Chordoma Foundation.

The pigeon racing community was so moved by Joe’s story that donations flew in; another racer even offered to auction one of his own birds for the cause. The Nemelkas also held a successful mail campaign that raised additional donations from friends and family. Their four other children even asked their grandparents to donate to the Chordoma Foundation as their sole Christmas gifts this year.

Meanwhile, the Vances decided to organize a 5K race in Jared’s memory. Over Thanksgiving weekend – the anniversary of Jared’s passing – nearly 100 friends and family members participated in the bittersweet event, running and walking along a course that weaved through the Vance’s neighborhood north of Salt Lake City, past some of Jared’s favorite places as well as the site where he is buried. Neighbors donated signs and banners, and the “JV Team” sold t-shirts proclaiming “fighting chordoma, one step at a time.” Through the event, family and friends contributed thousands of dollars to the Chordoma Foundation.

Together, the two families surpassed their goal, raising more than $29,000. The funds are being used to provide a $25,000 seed grant to Dr. Duan Zhenfeng, a cancer biologist at Massachusetts General Hospital who is pursuing genetic research on chordoma using tumor tissue and animal models. The remaining funds will be used to further the efforts of the Chordoma Foundation – a valuable resource for families that Christy wishes was available when her family was going through the fight.

“It was great that we were able to team up with Andrew and Jaime to do something positive together,” Christy says. “This disease is so aggressive, and if we can help advance research that might spare another family the pain of losing a child or a parent, that would be our ultimate hope.”

The Vances hope to make the fundraising race an annual tradition. “I’m a researcher myself,” Andrew explains, “so I know that projects like those funded through the Foundation’s seed grants can be a real catalyst for further work. We hope that this grant will help Dr. Duan gain some momentum, and that it will lead other researchers to jump on the bandwagon to advance chordoma research quickly.

Click here to learn more about Jared Vance and Anna Nemelka, or to contribute through their Chordoma Champion pages.