The President’s Corner

This month’s newsletter pays tribute to the incredible impact of our community: patients, advocates, physicians, and supporters alike on the lives of those affected by sarcoma.

We’re thrilled to welcome new board members Alexandra Capellini, M.D., Dr. Kyri Mosley Hamilton, and Terry Healey. A heartfelt thank you to departing members Julie Johnson, Stephanie Leider, and Alison Muse for their incredible contributions.

This month’s feature spotlight highlights sarcoma survivor and advocate Terry Healey, while we also pause to remember the lasting impact of Dr. Brian Van Tine.

Thanks to Inhibrx, our team visited MD Anderson and attended the CTOS Conference, gaining crucial insights to help expand our impact throughout the sarcoma community. CTOS celebrated its 30th anniversary with a special memorial tribute to Dr. Van Tine, a bustling poster hall, and multiple informative and cutting-edge panels and sessions.

Finally, our Sarcoma News Corner shares promising research updates offering hope to patients and families.

Read on to learn more and please donate generously!

Welcome New Board Members!

Pictured: Alexandra Capellini, M.D., Dr. Kyri Mosley-Hamilton, Terry Healey

Welcome Aboard Alexandra Capellini, M.D.,

Dr. Kyri Mosley-Hamilton, and Terry Healey!

We are excited to welcome Alexandra Capellini, M.D., Dr. Kyri Mosley‑Hamilton, and Terry Healey to the Sarcoma Alliance Board of Directors. Dr. Capellini brings a strong commitment to patient-centered care and advocacy, focusing on resilience and dignity for those living with physical differences. Dr. Mosley‑Hamilton draws on her own cancer journey to inspire hope and empower others, combining personal experience with community impact. Last, but certainly not least, Terry Healey is a longtime sarcoma survivor who has transformed his experience into a powerful platform as a keynote speaker, author, and consultant, sharing his message of courage and resilience with audiences across the United States.

Their expertise and dedication will strengthen our mission, and we encourage you to learn more about their work and stories through the links above.

Thank You Departing Board Members

Pictured: Julie Johnson, Stephanie Leider, Alison Muse

We would like to extend our heartfelt thanks to Julie Johnson, Stephanie Leider, and Alison Muse, who have recently transitioned from board service at the Sarcoma Alliance. As they step back, we celebrate their invaluable contributions and the countless ways they have supported the sarcoma community. We are grateful for their commitment to furthering the mission of the Sarcoma Alliance. 🌻

Sarcoma Patient Spotlight

Terry Healey on adversity and personal resilience

In this month’s newsletter, we are honored to highlight one of our newest board members, Terry Healey, a sarcoma survivor with a long-standing history of support for the Sarcoma Alliance.

How did you learn about the Sarcoma Alliance? I learned about the Sarcoma Alliance at a UCSF speaking engagement in 2001. Suzanne Leider was in the audience. We connected and met in person afterwards. We had much in common as we were both sarcoma survivors and had experienced sarcoma at a young age. Her commitment, despite her ongoing ordeal, was inspiring to me. Since our meeting, I have stayed connected to the organization both in supporting activities and in funding when possible.

Terry challenges audiences to focus on what they can control, and to apply his ReBAR (Reflect, Build, Act, Renew) resilience framework to address adversity, gain confidence and become not only content, but truly happy and successful in their personal and professional lives.

When you think back to your 20-year-old self, what kind of support would have made the biggest difference for you? I was diagnosed in 1984 and began participating in support groups through The Wellness Community (now The Cancer Support Community - SF East Bay). Support groups were instrumental in my healing, and they helped me to find the courage to share my vulnerabilities, which became very liberating for me. However, the groups I participated in were general (i.e. a mix of people with various types of cancer). What would have helped would have been to have had access to an organization like The Sarcoma Alliance, one aligned to my own cancer, and one that effects young people who are at times left with visible differences, at a time in life when appearances matter so much.

What do you hope young sarcoma patients take from your book and your talks? I hope young sarcoma patients can take a few things away from my book and talks:

There is great reason for hope. Sarcoma centers exist in so many universities today, so diagnosis and treatment have improved dramatically since I was diagnosed. Though I survived and ultimately thrived, the reconstruction I endured (which never reached the outcomes we all hoped for) would be entirely different today - and better results are available in the case of head & neck sarcoma patients.
Survival is more than possible.
My survival kit is one that others can leverage to build resilience, gain confidence, and find greater purpose.
It might be a long journey for some, but the wisdom we can gain can make our lives richer and more rewarding. We gain life perspective along the way, we become more empathetic, and we learn one of the greatest gifts of all - gratitude. Gratitude leads us to a positive mindset which is so important to moving our lives forward with positivity instead of uncertainty and doubt.

Terry’s story reminds us why community matters and why organizations like ours exist at all: to ensure that no one faces sarcoma without knowledgeable support, shared experience, and a sense of hope. We are grateful for Terry’s decades-long connection to the Sarcoma Alliance and for his ongoing commitment to supporting sarcoma survivors.

If you would like to learn more about Terry’s story, we encourage you to explore more of his story and resources at terryhealey.com, including his biography, book, and recent interviews.

In Memory of Dr. Brian Van Tine

It is with profound sadness that we join our colleagues in mourning the passing of Dr. Brian Van Tine, a nationally recognized leader in sarcoma research and a devoted physician whose advocacy for patients was unmatched. In keeping with his deeply patient-centered legacy, we share the reflections of someone whose life he profoundly touched.

Almost seven years ago, I got a life-changing phone call delivering the news of my sarcoma diagnosis. In the midst of all the terrible details in that call, there was one sentence that left me with hope:

"Dr. Van Tine, here at Siteman Cancer Center, is one of the nation’s leading sarcoma researchers and physicians and I’ve already put in a referral for you to see him."

At the time, I knew nothing about Dr. Van Tine. But I quickly learned that he was not only an extraordinary physician, but also a champion for patients and an asset to the global sarcoma community. For the next six years, I trusted him with my life. There was an unspoken reassurance I carried with me - if I ever needed someone to pull a rabbit out of a hat to save me, Dr. Van Tine was where I would place my bet. I always looked forward to my appointments with him because his passion and optimism filled the room.

My world was rocked when I learned of his unexpected passing. I feel this loss so deeply and am simply devastated, not only because of what he meant to me personally, but because of the immense loss to the scientific community. We are a small, rare bunch. Not many people raise their hand to fight for us, but he did, and what an impact he made and what a gap he leaves.

I am grateful to have been one of the lives impacted by Dr. Van Tine’s brilliance and his belief that there’s always something worth trying. Dr. Van Tine, rest in peace. The sarcoma world will feel your absence, but your legacy of dedication and innovation will continue to guide us.

--Julie Johnson, sarcoma patient & advocate and patient of Dr. Van Tine

MD Anderson Visit Boosts Second Opinion Grants Program

Thanks to a generous travel grant from Inhibrx Biosciences to attend CTOS, representatives from the Sarcoma Alliance were able to make an important visit to MD Anderson for a day of learning and collaboration along the way to Florida. During this visit, we met with several of the world's leading sarcoma physicians (Drs. Elise Haddad, Ravin Ratan, Neeta Somaiah, and Michael Nakazawa) and sarcoma clinical social workers (Lorie Cabitac, Han Bui) to better understand how MD Anderson connects patients with our Second Opinion Grants program and manages the travel logistics at this major sarcoma center.

These meetings were invaluable for improving coordination, sharing best practices, and exploring how to replicate MD Anderson’s success at other major sarcoma centers. We are eager to expand the reach and impact of the Suzanne Renée Leider Memorial Assistance Fund to benefit even more patients and their families. For more information on the program or to apply for a second opinion assistance grant to consult with a sarcoma expert, please visit: https://sarcomaalliance.org/second-opinion-grants/

Reflections from the CTOS 30th Anniversary Conference

From November 12-15, 2025, the Connective Tissue Oncology Society (CTOS) held its 30^th Anniversary conference in Boca Raton, Florida. CTOS is an international organization focused on advancing the study and treatment of sarcomas and other rare connective tissue tumors.

CTOS brought together researchers, clinicians, and patient advocates to share advancements in sarcoma research and explore collaborations on sarcoma education, support programs, and advocacy initiatives.

Conference highlights included:

Once again, the team from SPAGN (Sarcoma Patient Advocacy Global Network) graciously hosted a sarcoma patient advocacy lounge featuring posters from dozens of our sarcoma advocacy and patient support partners worldwide. It was gratifying to touch base and cement plans for further collaboration with SPAGN, the Northwest Sarcoma Foundation, Rein In Sarcoma, the Life Raft Group, the Sarcoma Foundation of America, the Leiomyosarcoma Support & Direct Research Foundation, the Chondrosarcoma Foundation, the Synovial Sarcoma Foundation, the Desmoid Tumor Research Foundation (welcome to new E.D. Katie Doyle Myers!), the Clear Cell Sarcoma Foundation, and MIB Agents Osteosarcoma Alliance, along with patient advocates and Sarcoma Alliance alumnae Suzie Siegel and Deborah Gates, among many others.

Chondrosarcoma received special focus this year at CTOS, with Jeff Kramer of the Chondrosarcoma Foundation moderating a medical session on this sarcoma subtype and leading a "think tank" on chondrosarcoma. We were also encourage by promising data and updates from Inhibrx Biosciences and Cogent Biosciences demonstrating incremental improvements in patient outcomes and expanding our understanding of the immune system’s role in chondrosarcoma and gastro-intestinal stromal tumor (GIST) .

The Synovial Sarcoma Foundation also showcased its growing impact, including a patient survey and tumor registry in collaboration with the Children's Hospital of Philadelphia (CHOP). Special thanks to Chas and Laura Spence, Nathan Imperiale and Eddie Cohen, and Maria Lopes of US World Meds for hosting a wonderful cocktail and dinner reception bringing together those of us working to improve the lives of people affected by synovial sarcoma.

Sarcoma Alliance President Philip Leider also had the special pleasure of reconnecting with his Yale college classmate, Dr. David D'Adamo, who recently became the Executive Medical Director at Cogent Biosciences. We look forward to working with the Cogent team and the Life Raft Group in 2026 to continue advancing the ball for people with GIST.

Sarcoma News Corner

PLD + Ifosfamide Shows Promise in Advanced Soft Tissue Sarcoma
A small Phase 1 study combining paginated liposomal doxorubicin (PLD) with ifosfamide for patients with most types of advanced soft tissue sarcoma found that about a third of patients had tumor shrinkage and over 80 percent had shrinkage or stable disease. Considering that almost all patients had metastatic disease, and Phase 1 clinical trials focus on safety not efficacy, this is very encouraging! Learn more!

New Strategies to Protect the Heart from Anthracycline Chemotherapy: Anthracycline drugs such as doxorubicin are very effective chemotherapy agents for a lot of cancers including many sarcomas. However, one of their major side effects is heart toxicity (cardiotoxicity). This article discusses some efforts to protect against this serious side effect, including clinical trial of a new protective agent. ascopost.com

Long-Term Hope for High-Risk Rhabdomyosarcoma
A boy who had been battling five relapses of alveolar rhabdomyosarcoma, had a remarkable long-term response to the combination of abemaciclib, temozolomide, and irinotecan. Although this was a single patient, the result is promising for a hard-to-treat pediatric sarcoma. Read the case report.

Mecbotamab Vedotin Extends Survival in Refractory Soft Tissue Sarcomas: The antibody-drug complex (ADC) Mecbotamab Vedotin (Mec-V) showed almost twice as long survival compared to approved agents, for patients with treatment-refractory leiomyosarcoma, liposarcoma, and undifferentiated pleomorphic sarcoma. Read more here.

Interested in more sarcoma-related news? Follow us on Facebook to stay up to date on the latest happenings in the sarcoma landscape, including cutting edge research.

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The Sarcoma Alliance is looking for passionate individuals interested in fundraising, grant writing, and outreach & communications. There are a number of ways you can volunteer. Email info@sarcomaalliance.org to get involved!

If you are unable to volunteer your time, please consider making a financial donation to the Sarcoma Alliance!

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