Chordoma Foundation


Champion Profiles

Sue J. swims for a cure

Susanna JohnsonAs 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

Nemelka Pigeon AuctionTwo 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.

Vance 5KMeanwhile, 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. 


Annual concert, auction raise funds in memory of remarkable woman – and to provide hope to those still facing chordoma

Aster Organizers

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.”

 


Survivor Teams with Fellow Cyclists to Raise Funds for Foundation

Chris Kuhn BikeFor most of his life, Chris Kuhn wasn’t a cyclist. At age 38, he still preferred distance running, hockey and golf. But after a chordoma diagnosis in 2004 resulted in several surgeries on his lumbar spine, his body no longer reacted well to his favorite sports. Craving a new way to stay active and fit, Chris found that bicycling fit the bill, and he and a friend soon started Not Dead Yet, a group of cycling buddies who get together regularly for fun and fundraising. About half of the guys in the group are cancer survivors.

In 2005, Chris and his Not Dead Yet mates held their inaugural fundraising event: a 25-mile bike ride along the shores of Casco Bay north of Portland, Maine, followed by a lobster bake for family and friends. Even a Nor’easter storm that day couldn’t stop them from celebrating another year of life. Through that event and subsequent fundraisers, the group has raised tens of thousands of dollars for the Livestrong Foundation and the Cancer Community Center in Portland, Maine.

This year, Chris and his cycling group decided to raise funds for the Chordoma Foundation. On September 13, 2013, they held the inaugural Climbing Cadillac, Conquering Chordoma ride on Mount Desert Island, a beautiful national park in Maine.

“That morning, 13 of us rode to the top of Cadillac Mountain, the first part of the continental United States to see the sunrise. For us, it was a symbol of hope. Through this event, we were able to raise nearly $16,000 for the Chordoma Foundation, and we were able to educate many people who didn’t know about chordoma as well,” Chris says proudly.

As the only group member to have battled chordoma, Chris felt particularly gratified that his friends chose the Chordoma Foundation to support. “The Foundation has gotten some terrific science going, and a little bit of money matters an awful lot to this organization. We hope these funds will be used to advance chordoma research, and perhaps to help connect some promising work being done in Maine with some other studies being supported by the Foundation.”

Chris Kuhn and FamilyChris, an interventional radiologist and married father of two, has been living well with chordoma since 2005, although he did have some residual tumor and underwent an additional course of radiation this summer.

“When you get the diagnosis, it’s crazy,” he says. “Unlike with many other cancers, there really hasn’t been any data on chordoma, and we’re just starting to understand what treatments do and don’t work. There are a lot of people with this disease who really need an organization like the Chordoma Foundation pulling for them. I hope that, as a result of supporting the Foundation, it will be easier for the next people who are diagnosed.”

 

 


European liaison expands Foundation’s reach overseas

Hans KeulenWhen Hans Keulen was first diagnosed with skull base chordoma in 2009, he searched for organizations near his home in the Netherlands or in nearby countries that could provide information and support to help him through this unfamiliar journey. After his search turned up empty, he decided to bring much-needed resources to the European chordoma community to help his fellow patients and advance care and research for this uncommon disease.

Hans had heard about the U.S.-based Chordoma Foundation (CF), and in March 2011 he attended the third Chordoma Community Conference in Bethesda, Maryland.

“I said to [Executive Director] Josh Sommer, ‘Let’s see what I can do for the Chordoma Foundation in Europe,’” Hans recalls. Josh readily agreed, and the two worked together to establish a European branch of the Chordoma Foundation. (For legal reasons, CF Europe is incorporated as a separate nonprofit entity in the Netherlands, but it operates as a branch of the U.S.-based Foundation.)

As CF’s European Liason, Hans has championed the Foundation’s work and expanded its European efforts in a variety of ways, including coordinating the first Chordoma Community and Physicians Conferences in Amsterdam in 2012.

“There are 28 countries in the European Union alone, with many different languages and medical and legal systems, so it’s really helpful to have someone based here to advocate for the Foundation,” the Dutchman explains.

In 2013, a tumor recurrence forced Hans to curtail his efforts for several months, but after recovering from surgery and getting adjuvant treatment with targeted therapy, he came back more determined than ever to make a difference. He and a small team of fellow volunteers are currently organizing the second European Community and Physician/Researcher Conferences for June 2014, and working hard to expand the Foundation’s network of patients, physicians and scientists across Europe. He is teaming with physicians in the European Society for Medical Oncology to develop standards and guidelines for the treatment of chordoma, has been instrumental in establishing the new European Chordoma Registry, and hopes to develop a European biobank soon.

One of the biggest challenges in Europe, Hans notes, is language. “In the northern European countries over 90 percent of the population has at least conversational knowledge of English, but in other European countries that number drops below 30 percent, so it’s important for us to translate the Chordoma Foundation’s website into several languages besides English. Our short-term goal is to have portions of the website and Facebook pages translated into French, German, Italian and Spanish, to provide country-specific information, and to create peer networks so people can connect and find support in their local language.”

Hans himself is conversant in several languages, and he often provides support and shares his experiences with fellow members of the chordoma community. That this self-employed businessman and married father of three has accomplished so much in just a few short years is amazing – but Hans knows this model isn’t sustainable. One of his immediate goals is to expand the European board and volunteer network to get more people actively involved in making this organization a success. Raising funds to sustain and expand these efforts is also a priority.

While Hans is currently focused increasing the Chordoma Foundation’s visibility and impact in Europe, he envisions a time when the Foundation will reach everywhere. “The global patient community for chordoma is so small, I think it’s important that we have one worldwide Chordoma Foundation with branches in Europe and other regions, so we can all work together to support each other and accelerate the search for a cure.”