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    Latest News, Synovial Sarcoma Registry

    Celebrating Milestones with Hope: The 100th Sign-Up for the Synovial Sarcoma Registry and Biospecimen Repository

    December 23, 2025 ayushis Comments Off on Celebrating Milestones with Hope: The 100th Sign-Up for the Synovial Sarcoma Registry and Biospecimen Repository
    A smiling woman with short dark hair and a black shirt takes a selfie. Text reads "Carrie Carpunky." The Synovial Sarcoma Foundation’s name and logo appear in the bottom left corner.

    We are thrilled to announce a significant milestone for the Synovial Sarcoma Registry and Biospecimen Repository, as we proudly welcome our 100th registrant. This achievement signifies the growing commitment to advancing research and improving treatment options for patients with synovial sarcoma.

    The registry serves as a pivotal resource, collecting invaluable data and biospecimens from patients diagnosed with synovial sarcoma. By participating, patients contribute to a collective effort to understand this rare form of cancer better and develop innovative treatment plans that can lead to improved outcomes. Every registration helps researchers in their mission to tailor therapies more effectively, offering hope to individuals and families affected by this challenging condition.

    Meet Carrie Carpunky: Our 100th Registrant

    Among the many courageous individuals contributing to this critical endeavor is Carrie Carpunky, our milestone registrant. Carrie’s journey with cancer began in 2010, when she experienced persistent stomach pains attributed initially to stress and a possible ulcer. It wasn’t until she consulted a gastrointestinal specialist that the word “tumor” entered her reality, launching her into a whirlwind of tests, emotions, and eventually, a cancer diagnosis.

    A collage of five photos featuring a woman with brown hair, sometimes with a man or a younger woman, in various settings including outdoors, smiling selfies, and with a yellow “10 Years Free” shirt and red mask.

    Carrie’s story is one of resilience. After a partial gastrectomy procedure, she found herself grappling with the ramifications of her diagnosis. Yet through the ups and downs of her journey—including a tumor that remained localized against the odds and the anguish of watching her symptoms evolve—she found an incredible ally in her oncologist, Dr. Brian VanTine, who provided care and compassion throughout her experience.

    Following years of diligent monitoring and treatment, Carrie has reached a point where she goes for annual check-ups, underscoring the value of early intervention and unwavering support. The recent loss of Dr. VanTine deeply affected her. “He was more than my oncologist; he was a friend,” Carrie reflects, highlighting the bond that forms between patients and their healthcare providers.

    Get Involved

    We invite anyone diagnosed with synovial sarcoma to join the Synovial Sarcoma Registry and contribute to this crucial research effort. By participating, you are not only helping us build a comprehensive resource for researchers but also becoming part of a community that believes in the potential for better treatments and outcomes.

    To learn more about registering and participating in this vital initiative, please visit our official page: Synovial Sarcoma Registry.

    As we celebrate this milestone with Carrie and all our registrants, we renew our commitment to gathering insights that could drive breakthroughs in understanding synovial sarcoma. Together, we can make significant strides towards better therapies and, ultimately, a brighter future for those affected by this disease.

    Read Carrie’s journey here, and explore more stories from other patients by visiting our Patient Stories section. Each story offers a powerful reminder of the resilience within this community and the impact of collective participation in advancing research.

    ayushis

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    Advocacy in Action Afami-cel Afamitresgene autoleucel biomarker testing biomarker testing synovial sarcoma chemotherapy CHOP clinical trials rare cancer diagnosis fungal infection immunotherapy metastatic synovial sarcoma lung new treatments for synovial sarcoma pediatric synovial sarcoma pericardial synovial sarcoma precision medicine Rare Cancer Rare Cancer Europe rare cancer research rare cardiac tumor rare disease drug development rare disease funding rare fungal infections in cancer patients rare pediatric cancer rare soft tissue sarcoma research sarcoma molecular testing soft tissue sarcoma symptoms soft tissue sarcoma testing solitary fibrous tumor SPAGN SS18-SSX translocation STAT6 marker SFT Synovial Sarcoma synovial sarcoma diagnosis Synovial Sarcoma Foundation synovial sarcoma in children synovial sarcoma research synovial sarcoma symptoms synovial sarcoma treatment T-Cell Therapy targeted therapy T Cell TECELRA webinar

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    Rare Cancer, Development

    Synovial Sarcoma Research and Rare Cancer Drug Development: Challenges and Progress

    April 27, 2026 ayushis Comments Off on Synovial Sarcoma Research and Rare Cancer Drug Development: Challenges and Progress

    Developing treatments for rare cancers like synovial sarcoma remains one of the biggest challenges in modern medicine—but recent progress shows what’s possible. One major milestone came with the FDA approval of Tecelra, the first engineered T-cell therapy approved for a solid tumor in the U.S., including synovial sarcoma. Why Rare Cancers Face Unique Challenges Synovial […]

    A scientist wearing safety goggles and gloves examines samples through a microscope in a bright laboratory, with other researchers working in the background.
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    New Research Identifies 4 Subtypes of Synovial Sarcoma, Opening Doors for Personalized Treatment

    April 23, 2026 ayushis Comments Off on New Research Identifies 4 Subtypes of Synovial Sarcoma, Opening Doors for Personalized Treatment

    Synovial sarcoma is a rare and aggressive soft tissue cancer, but new research is helping us better understand how it behaves—and how it may be treated in the future. A recent study using advanced single-cell RNA sequencing has identified four distinct subtypes of synovial sarcoma, each with unique biological features and potential treatment pathways. Why […]

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    Development, Education

    What a Breakthrough in Ewing Sarcoma Means for Synovial Sarcoma

    April 21, 2026 ayushis Comments Off on What a Breakthrough in Ewing Sarcoma Means for Synovial Sarcoma

    A new Phase 1/2 trial in Ewing sarcoma, just profiled in Clinical Trial Vanguard and published in Nature Medicine, delivered the kind of result the synovial sarcoma community should be watching closely. The trial paired trabectedin with low-dose irinotecan to target the EWS::FLI1 fusion, the oncogenic driver of Ewing sarcoma. For more than a decade, […]

    The Synovial Sarcoma Foundation is a registered 501(c)(3) nonprofit organization. Tax ID number is 33-4027591. Contributions to the Synovial Sarcoma Foundation are tax-deductible to the extent permitted by law.

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