Synovial Sarcoma Foundation

21/10/2026

The Synovial Sarcoma Foundation Tumor Board will convene virtually on October 23rd from 1–2 PM ET. 🩺

Hosted by Cancer Center at CHOP, Penn Medicine, and the Synovial Sarcoma Foundation, this multidisciplinary forum brings together medical professionals from around the world to discuss complex synovial sarcoma cases in both children and adults.

While the Tumor Board is open to medical professionals only, patients and families are encouraged to ask their oncologist or care team to join and present their case.

To join the Tumor Board or refer a case, please email [email protected]

20/10/2026

ICYMI: Our Chairman, Nathan Imperiale, joined Philip Leider, President of the Sarcoma Alliance Board, for a conversation about the Synovial Sarcoma Foundation. Nathan shared how the Foundation began, the research programs underway and the resources available to families today. Watch the full recording at the link in our bio.

The conversation continues tonight at 6:00 PM ET. Dr. Theodore Laetsch, Dr. Seth Pollack, Dr. Shanda Blackmon and Dr. Peter Mattei join us to discuss clinical trials, TumorGlow and advances in sarcoma surgery, with time for your questions. It’s free, and you can register at the link in our bio.

https://synovialsarcoma.org/two-leaders-one-mission-nathan-imperiale-and-philip-leider-on-synovial-sarcoma/

Our Chairman of the Board of Directors, Nathan Imperiale, was recently invited by Philip Leider, President of the Board of the Sarcoma Alliance, to present

19/10/2026

🧬 Signatera Testing: What It Is, Why It Matters & How to Ask for It

Following Callan’s recent recurrence, questions have come up within our community about Signatera testing, how it works, and how patients can request it through their oncologist.

We wanted to share some helpful information for anyone interested in learning more about this personalized blood test and how it may be used alongside routine scans to monitor for signs of cancer.

Callan’s experience has also brought up important questions about using newer tumor tissue to develop or update a personalized test, especially when a patient’s cancer has changed over time.

🎗️ Want to learn more? You can follow along with Callan’s journey through the link in our bio, where his family shares updates almost daily, including detailed information about the testing process, what they’re learning, and helpful tips along the way.

We encourage everyone to continue asking questions, sharing experiences, and learning from one another. These conversations are so valuable, especially in a rare cancer community where information and experiences can be limited.

13/10/2026

Join us for our upcoming community webinar focused on clinical trials, emerging research, and advancements in surgical treatment for synovial sarcoma.

We'll be joined by leading sarcoma specialists, including Dr. Seth Pollack, Dr. Shanda Blackmon, and Dr. Peter Mattei, to discuss ongoing clinical trials and new treatment approaches.

Topics will include:
- Current clinical trials: Updates on clinical trials led by Dr. Seth Pollack at Northwestern University and other ongoing research opportunities for synovial sarcoma patients.

- TumorGlow Pediatric Clinical Trial: An overview of the newly funded clinical trial at Children's Hospital of Philadelphia (CHOP) and Penn Medicine, exploring fluorescence-guided imaging to help surgeons better visualize tumors during surgery.

- Advancements in Sarcoma Surgery: A discussion of thoracic sarcoma surgery and how new technologies may improve surgical approaches and patient outcomes.

The webinar will conclude with a live community Q&A, giving patients, caregivers, and families the opportunity to ask questions directly to the specialists.

Date: Tuesday, October 20, 2026
Time: 5:00–6:00 PM CST (6:00–7:00 PM ET)

Whether you're exploring treatment options, interested in clinical trials, or simply want to stay informed about the latest synovial sarcoma research, we encourage you to join us.

We look forward to connecting with our community and sharing the work being done to advance research and treatment for synovial sarcoma.

Register here: https://njimedia.zoom.us/webinar/register/WN_pvVYc-4TTAa3P87umnn1uQ #/registration

12/10/2026

Honoring Cyndi Cohen and Ilana Maimon Grant ❤️

Today, we are honoring the lives of two remarkable women in our synovial sarcoma community, Cyndi Cohen and Ilana Maimon Grant. While each had her own journey with this disease, both leave behind families, friends, and loved ones who are finding meaningful ways to carry their legacies forward. We want to take a moment to honor their lives, share their stories, and recognize the incredible love their families have shown during such a painful time.

While navigating unimaginable grief, both families have chosen to turn their loss into action, creating memorial fundraising pages in honor of Cyndi and Ilana to support the Synovial Sarcoma Foundation and help advance research for others facing this disease.

This is the power of our community.

It has been incredibly moving to see the outpouring of love and generosity from family members, friends, and supporters who have donated in their memory. Every donation represents someone who loved them, someone whose life they touched, and a desire to help make a difference for others.

We know that no amount of fundraising can replace the people we've lost. But through these efforts, their names, their stories, and their impact continue to be part of the work we're doing to move synovial sarcoma research forward.

To the Cohen and Grant families, thank you for allowing us to share your loved ones' stories and for choosing to support our community during such an incredibly difficult time. We are deeply grateful.

We invite you to read more about Cyndi and Ilana in the slides above, remember the lives they lived beyond their diagnoses, and consider supporting the memorial fundraisers created in their honor.

Their lives were so much more than this disease, and their legacies will continue to make a difference in the lives of others.

If you would like to honor a loved one by creating a memorial fundraising page, please reach out to us at [email protected].

We would be honored to help you celebrate their life and carry their legacy forward.

12/10/2026

A rare case with an encouraging outcome 🔬

A new case report in The Permanente Journal describes only the third known synovial sarcoma arising from the hyoid bone, a small U-shaped bone in the neck. The patient, a 62-year-old man, received chemotherapy (doxorubicin, ifosfamide, and mesna) before surgery, followed by radiation. Pathology showed no remaining viable tumor, and he remains disease-free years later.

Why it matters:
✅ Sarcoma should be considered in unusual neck masses, since delayed diagnosis is common
✅ Molecular testing is essential to confirm the diagnosis
✅ Multidisciplinary planning helps get the treatment sequence right

This is a single case, so it can’t prove the treatment order caused the outcome, but it adds to what we know about this rare presentation.

💡 Have you had biomarker testing? HLA typing, MAGE-A4, and NY-ESO-1 tests can open doors to therapies like Tecelra and clinical trials. Ask your care team today.

🔗 Learn more: https://synovialsarcoma.org/synovial-sarcoma-of-the-hyoid-bone-a-rare-case/

09/10/2026

At 25, Susie Leider was a nurse at UCSF and a runner with a sore knee. Her doctors thought it was a cyst. The pathology came back as synovial sarcoma, a cancer she had never heard of. She and her brother Philip went up to the hospital library, found it in a textbook, and read that she had five years to live.

She would not meet another sarcoma patient for two to three years. And she kept asking one question: if this is this hard for someone surrounded by nurses and doctors, how does anyone without that support get through it? Her answer was the Sarcoma Alliance, built for people living with every type of sarcoma.

Today we are sharing Philip’s story. As President of the Board of the Sarcoma Alliance, he continues the work his sister Susie started 25 years ago. What began with a budget of just $20,000 a year and grassroots fundraising efforts, including a family cookbook and a paddleboard race from Catalina Island to the California coast, has grown into an organization supporting sarcoma patients and families nationwide. Twenty-five years later, he says patients still face what she faced: uncertainty, isolation, and the “scanxiety” that comes before every scan. His message to you is clear. Sarcoma is different, and a second opinion from a sarcoma expert matters.

That same purpose brings us together today. Our Chairman, Nathan Imperiale, joins the Sarcoma Alliance for “Inside the Synovial Sarcoma Foundation: Research, Resources, and Community.” Nathan will share how one family’s diagnosis became a national research effort, and walk through resources available to you right now: the International Synovial Sarcoma Tumor Board, our Patient Registry and Biorepository, the dedicated research lab at Children’s Hospital of Philadelphia, and TumorGlow surgical imaging. He will also take your questions live.

Today, Friday, October 9
12:00 to 1:00 PM CT on Zoom
Free to attend. Register at the link in our bio.

Thank you to the Sarcoma Alliance for the invitation, and to US WorldMeds for sponsoring the session.

08/10/2026

September was an incredibly heavy month for our synovial sarcoma community. We experienced heartbreaking losses of people we love, people who supported others through their own journeys, and people who made a lasting impact on this community.

Through that grief, so many of you turned your love into action. You created fundraising pages in honor of loved ones, organized events, made donations, and continued spreading awareness of this rare disease.

There are so many names to recognize this month, and we are incredibly grateful for every single one of you.

To everyone who donated, shared a fundraiser, honored a loved one, or helped spread awareness: thank you. Every contribution, no matter the size, helps us continue advancing synovial sarcoma research and supporting the people affected by this disease.

Our community may be small, but together, we are powerful.

If you’re looking for a meaningful way to honor someone you love, please reach out to us at [email protected]. We’d be happy to help you create a personalized fundraising page in their honor.

Thank you for continuing to show up for one another, remembering those we’ve lost, and helping us move this work forward.

Together, we go far. 🎗️💛

07/10/2026

Last night, we had the chance to attend the Sarcoma Foundation of America Gala and connect with so many incredible people across the sarcoma community. 💛

It’s always special to come together with patients, survivors, caregivers, advocates, researchers, and those dedicating their lives to moving this community forward, while also remembering and honoring the incredible lives we’ve lost along the way.

Thank you to the Sarcoma Foundation of America for an evening of awareness, advocacy, and hope. We’re grateful to be part of this community and surrounded by so many people who care deeply about making a difference.

If you’re a synovial sarcoma patient or survivor and want to be part of the growing research in our community, click the link in our bio to learn more and join our International Registry & Biorepository. 🎗️

05/10/2026

📣 Inside the Synovial Sarcoma Foundation: Research, Resources, and Community

This Friday, October 9, our Chairman, Nathan Imperiale, will join the Sarcoma Alliance for a conversation about what we’ve been working on at the Synovial Sarcoma Foundation, what’s ahead, and most importantly, how these efforts directly support our patient and caregiver community.

Nathan will talk about how SSF got started and take a deeper look at some of the research and resources we’ve built alongside our partners at CHOP and Penn Medicine, including:

• Our International Synovial Sarcoma Tumor Board
• The Synovial Sarcoma Registry & Biorepository
• Dedicated synovial sarcoma research at CHOP
• TumorGlow surgical imaging research
• Resources available to patients and families
• Ways our community can participate and help move research forward

There will also be a live Q&A, so this is a great opportunity to hear directly from Nathan and ask questions about the work happening at SSF.

📅 Friday, October 9
⏰ 12:00–1:00 PM CT / 1:00–2:00 PM ET
💻 Zoom
🎟️ Free to attend

Whether you’re a patient, survivor, caregiver, family member, clinician, or advocate, we’d love to have you join us and learn more about the work your participation and support are helping make possible.

Hosted by the Sarcoma Alliance and sponsored by US WorldMeds.

Link in our bio to join! We hope to see you there! 💛