State of Sarcoma at Curefest 2025: Families and Researchers Share in Connection
On Saturday morning at Curefest 2025, the Rhabdo Coalition hosted the State of Sarcoma, an event designed to bring families and researchers together in open, approachable conversation. Held at the JW Marriott in Washington, DC, the gathering was exceptionally well received, drawing over 80 parents, advocates, survivors, and leading experts in the field of sarcoma research.
The goal was simple yet powerful: to talk with families affected by sarcoma, especially moms and dads, about research so they could better engage, ask questions, and take part in advocacy through the Rhabdo Coalition.
An Important Discussion About Sarcomas
The morning opened at 9:00am with two sessions of moderated discussions where leading researchers shared their insights in a friendly and approachable way. Instead of slides or technical lectures, leading researchers from St Jude, Penn State, and NIH spoke in open conversation guided by thoughtful questions from Rhabdo Coalition moderators. Families described the style as conversational, easy to follow, and refreshingly down-to-earth, while still offering valuable depth about sarcoma research.
Session Highlights
Session 1: Understanding Sarcoma
Dr. Giselle Sholler, Penn State / Beat Childhood Cancer
Dr. Jack F. Shern, NCI – Pediatric Oncology Branch
Moderated by Robyn Spoon, Elevate Childhood Cancer Research
With Dr. Giselle Sholler and Dr. Jack Shern, families explored what makes sarcomas unique among childhood cancers and why they are so challenging to treat. Topics included the importance of clinical trials and how collaboration across research groups accelerates progress. Families also heard why grassroots fundraising is vital for pushing research forward.
Session 2: Trials and the Future of Research
Dr. Elizabeth A. Stewart, St. Jude Children's Research Hospital
Dr. Javed Khan, NCI – Genetics Branch
Moderated by Oscar Ortiz, SebastianStrong Foundation
Dr. Elizabeth Stewart and Dr. Javed Khan guided parents through the landscape of clinical trials—what they mean, how families can find them, and the similarities between Phase 1 and Phase 2 studies. They also reflected on how much has changed between 2015 and 2025, and what new studies are on the horizon. Again, the role of community-driven fundraising and advocacy was emphasized as the engine that helps trials launch and sustain momentum.
Powerful Networking Time
After the panel discussions, families, advocates, and researchers spent an hour connecting one-on-one. Parents and advocates were able to share their personal stories directly with the presenting researchers. Researchers described the conversations as deeply meaningful, and families appreciated the chance to ask individual questions in a personal setting. This networking hour opened the door for future collaboration across families, organizations, and research institutions.
Family Voices
The heart of the event was the families who came to listen, share, and learn. Attendees included bereaved parents honoring their children’s memory, parents currently walking through treatment with their sons and daughters, survivors themselves, and extended family members determined to advocate for cures.
Some came in honor of children like Brittney, Sabrina, Norah, and Emily, whose lives were cut short by sarcoma. Others came with the determination of parents whose children, like Jackson and Axel, are still fighting or surviving. Still others represented nonprofits and advocacy organizations that have grown out of their own personal journeys.
Looking Ahead
The State of Sarcoma showcased that progress depends on families and researchers walking this road together. By making science accessible and conversation-centered, families left empowered to engage more deeply in advocacy and research efforts. Researchers left energized by the human stories at the heart of their work.
We are grateful to every family who joined us, to our incredible panel of researchers, and to the Curefest community for making space for this important conversation. Together, we move closer to a future where every child diagnosed with sarcoma not only survives but thrives.
Rhabdo Coalition
The Rhabdo Coalition is a united force of organizations founded in honor of children who have faced rhabdomyosarcoma, a rare and aggressive childhood cancer. Together, we are driven by love, loss, hope, and determination to push for better outcomes and brighter futures.
💛 Founding Members of the Rhabdo Coalition:
Mighty Millie Foundation
Maddie’s Promise
Summer’s Way
Sebastian Strong
Friends of TJ Foundation
Elevate Childhood Cancer
Learn more about the Rhabdo Coalition at rhabdocoalition.org.