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!”
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.
Annual concert, auction raise funds in memory of remarkable woman – and to provide hope to those still facing chordoma
One thing Alison Laird delighted in most during her eight-year battle with chordoma was proving her doctors wrong. A woman of amazing strength and spirit, she wasn’t about to let cancer rob her of the things she enjoyed – including traveling, dining and talking with others. As she went through multiple surgeries, long recoveries and hospitalizations, and treatments at home in Calgary, Canada and in California, she channeled that strength and spirit into making the most of life – and showing her doctors, family and friends how much she could still do.
“She was always finding the positives in the situation,” recalls her daughter, Catriona (Cat), who was at her mother’s side through most of her battle. “For instance, she always wanted to travel, so when she had to go to California for treatment, she saw it as a dream come true for her to get to visit there!”
On June 12, 2008, at the age of 60, Alison lost her long battle with chordoma. Cat, her father, Ian, and her mother’s close friend Carolyn Harley decided to plan a fundraising event in Alison’s memory to benefit chordoma research. The inaugural Purple Aster Concert and Silent Auction in Calgary drew more than 100 music lovers and friends to hear professional local musicians and learn more about this insidious form of cancer and the need for research funding. Each year, the event has grown – in 2012 the 4th annual Purple Aster drew 175 participants and raised more than $15,000. A special moment came when Chordoma Foundation board member Dr. Ed Les, also of Calgary and a chordoma survivor who provided a matching gift, told the crowd: “This isn’t just in memory of somebody we’ve lost now; this is a fight for all of us who are still fighting.”
Over the years, “the Aster” has raised nearly $55,000 to support the Chordoma Foundation’s work. The event is a team effort. Carolyn, a self-described late bloomer as a musician (the purple aster is a late-blooming flower), arranges the concert. Cat coordinates the silent auction, and Ian manages the finances. Other friends and family also pitch in.
This year, the funds raised by the Aster were designated toward a Chordoma Foundation seed grant awarded to Dr. Cheryle Séguin, a musculoskeletal researcher at the University of Western Ontario. Dr. Séguin, who studies spinal disc development, recently made a scientific breakthrough that provided the missing link researchers needed to study the genesis of chordoma. This grant will help Dr. Séguin’s lab take advantage of the opportunity created by this breakthrough. The Aster organizers and participants are especially excited to support chordoma research based in Canada. (To learn about Dr. Séguin’s research, click here.)
Of the Purple Aster event and the work that goes into it, Cat says: “My mother’s spirit drives all of this. She always had this way of surprising people and proving them wrong. We all feel the same way now. Chordoma doesn’t get to win.”