Synovial Sarcoma Foundation

19/06/2026

Thank you to everyone who has chosen to be part of our community. Whether you’re a patient, survivor, caregiver, researcher, healthcare professional, advocate, or supporter, your engagement helps bring greater awareness to synovial sarcoma and the urgent need for research, resources, and connection.

We’re grateful for every follow, share, comment, and conversation. Together, we are building a stronger, more informed, and more connected synovial sarcoma community.

Thank you for joining our mission. 💛

17/06/2026

⏳ One month to go!

On July 17, 2026, we will celebrate the first-ever National Synovial Sarcoma Day—a historic day dedicated to raising awareness, honoring patients and families, and fueling progress toward better treatments and cures.

For a disease that has long been overlooked, this day represents something powerful: recognition, visibility, and a united community determined to make a difference.

Over the next month, we’ll be sharing facts, stories, and ways you can get involved. Mark your calendars, spread the word, and join us as we make history together.

💛 July 17, 2026
🎗️ National Synovial Sarcoma Day

12/06/2026

Biomarker testing can change everything about a patient’s journey. It can open the door to more targeted treatment options, clinical trials, and more informed decision-making at a critical time. 🕒

Too often, this step comes too late.

That’s why we’re encouraging patients and caregivers to ask early:
Has biomarker testing been done? Should it be done now? How will it guide treatment decisions?

These questions matter. Early answers can lead to better options, better planning, and better outcomes.

10/06/2026

Understanding how synovial sarcoma protects itself from the immune system is an important step toward better treatments. This study explores the mechanisms behind that process and potential ways to target them.

Tap on the 🔗 to learn more.

A landmark study from Jerby-Arnon, Neftel, Shore, and colleagues at the Broad Institute of Harvard and MIT, Massachusetts General Hospital, Dana-Farber Cancer

07/06/2026

Today, on National Cancer Survivors Day, we honor the strength, resilience, and courage of every survivor in the synovial sarcoma and cancer community. 💛

Survivorship is more than a milestone; it is the story of perseverance through uncertainty, treatment, setbacks, victories, and hope. We celebrate every individual who continues to fight, heal, advocate, and inspire others along the way.

To all survivors: your journey matters, your voice matters, and your strength gives hope to so many facing this disease.

The Synovial Sarcoma Foundation stands beside you today and every day as we continue working toward better treatments, more research, and ultimately, a cure.

05/06/2026

We’re building the world’s most rigorous synovial sarcoma registry and biorepository to power the research that could save your life. Enrollment puts you inside the research community. Claim your spot.

04/06/2026

A rare synovial sarcoma case went misdiagnosed for more than 3 years after standard tests missed the mark. The takeaway? Early biomarker and fusion testing can be critical to getting the right diagnosis and treatment sooner. 🎗️

Read more: https://synovialsarcoma.org/when-synovial-sarcoma-hides-in-plain-sight-a-diagnostic-wake-up-call/

A case report published in Frontiers in Oncology by Miyazaki, Oike, and colleagues at Niigata University Graduate School of Medical and Dental Sciences,

01/06/2026

This past weekend, the Synovial Sarcoma Foundation attended ASCO 2026, the world’s largest gathering of oncologists and cancer researchers. We were proud to represent the synovial sarcoma community in conversations with leading researchers, institutions, biotech companies, and advocates working to advance new treatments and research opportunities for our disease.

From promising discussions around mRNA vaccines, T-cell therapies, and SUMO inhibitors to collaborations focused on expanding treatment access, this has been one of the most hopeful and productive weeks since founding SSF.

One message we heard repeatedly: synovial sarcoma research urgently needs more patient data and tumor tissue to accelerate discoveries. Every patient enrolled in the SSF Patient Registry and Biorepository helps move research forward.

Rare deserves research, and the momentum for synovial sarcoma has never felt stronger. 💙

27/05/2026

Honoring Officer Joey Toro 🕊️

If you knew Joey, you knew his light. He was funny, full of energy, endlessly kind, and the type of person who made everyone feel like family. Whether through his colorful voice messages, late-night check-ins, or constant encouragement, Joey showed up for people — even while fighting through years of surgeries, treatments, and recurrences.

But Joey didn’t just fight for himself. He spent countless hours advocating for synovial sarcoma research funding, supporting newly diagnosed patients, sharing treatment information, and helping others feel less alone in this journey. Alongside his mom, Polly, he became a powerful voice within this community and a true friend to so many.

Even through unimaginable hardship, Joey never lost sight of what mattered most: love, faith, family, and hope.

His absence leaves an immeasurable hole in our community, but his spirit and impact will continue to live on through every life he touched and every step forward in the fight against synovial sarcoma.

💙 Read Joey’s story and support research in his memory through the link in our bio.

26/05/2026

Thank you for the update, Eli. We are thinking of you today and hoping this new treatment plan brings you much success. 💙

Eli is beginning his Tecelra treatment today, which starts with chemotherapy to lower existing immune cells and make room for the engineered T cells to expand and work effectively.

Eli learned he was eligible for this treatment through biomarker testing — something every synovial sarcoma patient should ask about. Biomarker testing can help you better understand your tumor and identify treatment options that may be available to you.

At your next appointment or through your patient portal, ask your doctor if these tests have been completed:
• HLA Typing
• MAGE-A4
• NY-ESO-1

If not, request testing through national sarcoma-focused labs such as Caris or Tempus.

Learn more and access printable resources at: sarcomabiomarkertesting.com