Chondrosarcoma CS Foundation Support

Chondrosarcoma Foundation in Business for Six Years
Enters Seventh Year with an Ambitious Strategic Plan

The Chondrosarcoma (CS) Foundation will commemorate its sixth anniversary by continuing to educate the public about this ultra rare bone cancer, advocate for patients fighting the disease, expand the Chondrosarcoma Patient Registry and report on our global natural history study.

On May 14, 2020, the CS Foundation was officially incorporated, six months after Shayna Elise Kramer lost her battle with Chondrosarcoma at the young age of 28. Rather than dwelling on her own struggle, Shayna expressed a desire to educate the world about Chondrosarcoma. She learned there was very little public knowledge about Chondrosarcoma and no platform where doctors and health care professionals could share information and best practices regarding treatment to specially address Chondrosarcoma.

Because Chondrosarcoma is rare there are only a couple of research and clinical trials. The CS Foundation shares the latest research, technological innovations, medications, and treatments. Clinical Research has identified medications that can be used to inhibit, suppress, or destroy Chondrosarcoma cancer cell growth but more research and clinical trials are needed to confirm these findings. The CS Foundation is involved in helping to create new clinical trials with combination therapies to fight the aggressive subtypes including mesenchymal and dedifferentiated chondrosarcoma.

CS Foundation Activities
During the past 6 years, the CS Foundation has hosted six International Virtual Dialogues to bring prominent clinical researchers and medical professionals with patients and caretakers. These forums have helped to establish a dialogue on chondrosarcoma and have helped the foundation expand its mission.

February 6 (Shayna’s birthday) the Foundation promotes Chondrosarcoma Awareness Day. Over 5,000 people from around the world have signed the Foundation’s petition and wear yellow ribbons and wrist bands to raise awareness about Chondrosarcoma as well as creating fund raising activities to support the Foundation’s mission.

Chondrosarcoma Foundation hosted its first Think Tank.
On November 11, 2025 in Boca Raton, Florida; the Chondrosarcoma Foundation hosted its first Think Tank entitled: Advancing Chondrosarcoma Treatment, Preventing Disease Progression, Recurrence & Metastasis. The Think Tank presenters were multidisciplinary sarcoma specialists who were known experts treating chondrosarcoma. It included seven sessions addressing the continuum of care from early detection, diagnosis, surgery, intervention, research and clinical trials. The videos and transcripts of each topic that were presented in the Think Tank are posted on the web site: https://csfshayna.org/thinktank/

Chondrosarcoma Strategic Plan
Feedback from the Think Tank held the past November addressed gaps in longitudinal clinical and molecular data, underscoring the need for a robust patient registry capable of informing both real-time care decisions and future clinical trials and research. In response, the Chondrosarcoma Foundation has created a strategic plan to meet unmet patient needs, increase the frequency of the Chondrosarcoma Tumor Board meetings and expand our existing IRB approved Chondrosarcoma Patient Registry to include a patient biobank and the analysis of genomic and transcriptional elements of chondrosarcoma.

Since March 2023, the CS Foundation has been working with NORD: National Organization for Rare Diseases to develop a Patient Registry / Natural History Study. The Chondrosarcoma Patient Registry is a platform for patients around the world to strengthen their voices and collectively share information about this rare bone cancer. This global resource provides Patient Reported / Real World data for researchers to use to advance drug development and treatment options to help improve patient care.

We are in the process of expanding the Patient Registry by creating the Chondrosarcoma biobank. It will establish a comprehensive atlas to enable therapeutic discovery through integrated DNS, RNA and Germline profiling, and open data sharing. The project has two objectives: (1) generate a high-quality, annotated biospecimen resource for chondrosarcoma and (2) create a web-based platform to integrate and disseminate data and models to the broader research community. This effort will facilitate the identification of novel therapeutic targets and support the development and testing of new treatment strategies. In addition, by providing a centralized and collaborative platform, this effort will strengthen research partnerships across institutions and disciplines. The goal will be to utilize the biobank as a resource for improved therapeutic options and better clinical outcomes for patients with chondrosarcoma.

Thank You for Your Support
During the past six years many CS Patients, caregivers, family members and friends have supported the Foundation through their donations and fund-raising activities. We received donations from family members in honor of their lost loved ones. We have had others like Julie Mathews that supported 5K walk / runs and Jamie Elliott Shuey to play in fundraising Pickleball tournaments. Lifecycle holdings in Franklin, Tennessee hosted a biking event to honor an employee with CS. Amber Sarcone, a teacher and guidance counselor with CS challenged her students to raise money for the Foundation and gave the class the raised the most money a pizza party. Most recently Ernest Castro sponsored an Auto Show, raising $27,000 to honor his 16-year-old grandson who battles mesenchymal chondrosarcoma. The money raised will be used to build the Chondrosarcoma biobank and the project will be named for his grandson Alex.

The most elaborate and daring fund-raising event came from Ricky Ashman from Sussex England to honor his Mum (a CS Survivor). Four years ago, Ricky raised $1,500 US dollars for the Foundation by sky diving 15,000 feet. We invite you to check out his sky diving video by clicking the link below.

https://www.facebook.com/watch/?v=632947575166649

In addition to family and friends, we are grateful for our corporate donors including Fox & Roach Trident Charities, a subsidiary of Berkshire Hathaway in Devon, PA and CSX Transportation from Andover, MA. Finally, we appreciate the opportunities and support to work with Inhibrx, a biomedical company based in San Diego, CA. and Servier Pharmaceuticals, headquartered in France with an office in Boston, MA. Both companies have supported the CS Foundation and their activities for the past six years.

Our fight against chondrosarcoma will continue through our efforts to educate, advocate, and contribute to research, clinical trials to improve care and hopefully one day soon, we will find a cure.

For more information, visit the Foundation’s website: www.csfshayna.org or contact Jeffrey Kramer, President, Chondrosarcoma CS Foundation, Inc. at [email protected]

Please mark your calendar:

Our next Chondrosarcoma Foundation Support Group Meeting is scheduled for Wednesday, May 27 from 7:30pm - 9:30pm Eastern Standard time / New York time.

To register to participate in the meeting if you did not get an e-mail notice, go to:

Support Groups - CS Foundation Support Groups Registration Chondrosarcoma Patient and Family Support Group Data from our Chondrosarcoma Patient Registry indicates that the mental health and quality of life is less than what exists for other cancer patients. We want to do something about this. The Chondrosarcoma Foundation, Inc. i...

Dedication
Jamie Elliot Shuey, a Champion and an Inspiration


It is with deep sadness that I share that Jamie Elliott passed away on Wednesday, April 15 from complications arising from Chondrosarcoma. Jamie was diagnosed in early 2017 and fought the beast for over 9 years. In November 2025 she called me to let me know her disease progressed. Jamie spent several months in the hospital and last few weeks in the Intensive Care Unit. She was 75 years old, she is survived by her husband Bob, her three children Sadler, Aubrey and Asa and her three granddaughters Harper, Hazen and Hattie.

Jamie had an incredible life and she will be remembered for a lot of accomplishments. She had a successful career as a stewardess with Braniff Airlines from 1971-1987, and an even more exciting career as a “stuntwoman” for the Screen Actors Guild from 1987-2002, According to Jamie: “During the reorganization of Braniff, I lucked into meeting a stunt coordinator for the movie business and discovered we had mutual friends. I got my SAG card in 1985 and worked on major films and commercials. I worked on Robocop 1, doubling, Nancy Allen, D.O.A. doubling Meg Ryan, I fell into a Christmas Tree in Dennis Quaid’s arms in Dante’s Peak, and worked on Free W***y 1, and Hands That Rock the Cradle, just to name a few.

Jamie has always been active. She was an athlete starting in high school. Her passion was playing golf and pickleball. She played her first game of pickleball, on Vashon Island, Washington in 1990 and fell in love with it. In 2012, she became a Co-Founder of a local Pickleball club. She and the other officers began holding clinics and traveled to Colorado, Texas, and New Mexico to play in tournaments. Jamie became a USA Pickleball Ambassador around 2015. With her knowledge of teaching pickleball, she got others involved to help her build courts, and they ordered portable nets

Jamie’s Journey with Chondrosarcoma
In early 2017, Jamie slipped on ice and fell, hitting her head and back on a curb. She started having back pain that summer and just thought it was from playing golf and pickleball. Her provider sent her for an X-ray, and they found a mass on a rib. The next day she went for CT, and was told it was a tumor, and they were not sure it was cancer and wanted her back for a biopsy.

“If my Chondrosarcoma tumor was not detected early,
I would not be here today” Jamie Elliott Shuey

Jamie recalled: “I remember going home, getting on my PJ’s and burying my face crying. My husband just got home, came into our bedroom, and I remember the look on his face, as I said, I have cancer. The three worse words I had ever said. We went back for my biopsy, and the results came back as Dedifferentiated Chondrosarcoma. I started doing research, and since we had a home in the Dallas area, I found University of Texas Southwest Hospital. The intake person there knew about Chondrosarcoma and said that I needed to see a sarcoma specialist. An appointment was scheduled for January 2018. I first met with a surgical oncologist, and he explained that I would need to have four ribs from the back right side removed. I am not a crier, but this was emotional. By the time they could get a team together, the surgery was set for March 15, 2018”

I was back to recovery and not on any medication. Four months later I was back playing golf and pickleball. I entered the National Olympics in Albuquerque, NM and with my doubles partner. We played for the gold medal, but we played three games, and I was getting tired, and we lost by two points winning the silver medal instead.

In December 2018, another tumor was discovered in Jamie’s spine. In March 2019, she had another surgery that paralyzed both legs. Jamie never gave up. She went through months of physical therapy. Her determination to get back on court won over her affliction. She did not think she was stable enough to play standing up and decided to buy an adaptive sports wheelchair in January of 2021. She named it “Barney” after the founder of pickleball, Barney McCallum.

Jamie had numerous surgeries in her fight against chondrosarcoma, she has had brachy radiation on her spine where radiation plates were put in her back and a lot of ablations on her lungs and liver. She also was prescribed Tibsovo / Ivosidenib daily, a systemic medication that inhibits the IDH1 biomarker found in 60% of all chondrosarcoma patients. The medication kept the growth of chondrosarcoma in check and allowed Jamie to live a normal life. With all those procedures, nothing stopped Jamie from playing pickleball. Two years ago, Jamie had a major surgery and three days later she played in a wheelchair tournament.

Nothing (not even Chondrosarcoma) would keep Jamie down
Soon, Jamie started meeting up with other wheelchair players, and they started playing together. Transitioning from a standing player to a wheelchair player was tough. According to Jamie, it was tough for two reasons. First, learning how to get your chair in and out of the car was very challenging. Then, maneuver a wheelchair on the court while keeping your paddle in one hand, one hand on the wheel, then up for a shot and back on wheel and getting back into position, not to mention sitting lower than a standing position. Second, being a wheelchair player is mentally and socially challenging. The fear of rejection is very tough.
Jamie’s knowledge of pickleball as a standing player, and being a USA Pickleball Ambassador, helped her with her knowledge of playing on the court. Jamie’s new mission was to help wheelchair players and standing players overcome these obstacles, and to help grow a wheelchair pickleball group. The group is not only for her, but for future para-wheelchair players. Her new goal was to make the Pickleball community be all-inclusive. Jamie has found that pickleball helps people with their physical, social, and mental health, whether it is standing or in a wheelchair.

Jamie was a “Giver” and always thinking of others first.
In addition to being physically active, Jamie was a volunteer. She volunteered at Salvation Army (past 9 yrs), she ran “Dink for Pink” every October to help raise money and awareness for breast cancer. She is an advisor on her community (Heritage Ranch) pickleball club, and for Clemmer Classic Pickleball Tournaments. In 2023, Jamie and four friends formed a 501C3 non-profit, called “Para Pickleball Program” or (P3) with CNP (Chicken n Pickle) as their sponsor. Carvana heard about this and came out to video the wheelchair players and Jamie. After that event, Carvana donated enough money to purchase six sports chairs.

Jamie got involved with the Chondrosarcoma Foundation shortly after it became public in late 2020. I had no idea about Jamie’s courageous life until we honored her on February 6 for Chondrosarcoma Awareness Day. Last year, Jamie and I approached USA Pickleball and started an Early Awareness campaign called Smashing Sarcoma! https;//smashingsarcoma.org Jamie is and will be the founder and poster child for the campaign.

Video: National Tournament - Smashing Sarcoma!

Jamie’s Lasting Legacy.
Jamie had a heart of gold and gave way more than she received. Jamie was a leader and organized numerous fundraisers for the CS Foundation and Pickleball. Jamie never complained about her struggle with chondrosarcoma and never let it stop her from living and enjoying life to the fullest. There will always be a place in my heart for Jamie and I am so grateful for the time we spent together. Jamie made a difference and her legacy will continue for the sport of Pickleball, the inclusion of adaptive wheelchair players and the Smashing Sarcoma campaign.

Jamie’s way of thinking was, “You can't just sit around, you have to get up and move, no matter what's going on in your life.” She had Stage 4 chondrosarcoma and outlived the time her doctors predicted. Jamie genuinely believed, “Pickleball has saved her life” along with her Faith, Family and Friends. Jamie and Barney, her wheelchair, had a motto: “Where There's a Wheel There's a Way!”

Reminder:

Our next Chondrosarcoma Foundation Support Group Meeting is scheduled for tomorrow night Wednesday, April 8 from 7:30pm - 9:00pm Eastern Standard time / New York time. The link to the meeting is listed below.

Chondrosarcoma Foundation is inviting you to a scheduled Support Group Zoom meeting.
Join Zoom Meeting

https://us06web.zoom.us/j/89183153683?pwd=SmpYLBBa4HDcRKybQ8LBlLtlrCmrqb.1

Meeting ID: 891 8315 3683

Passcode: 665236

Looking forward to catching up with you.

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