The Bloom Syndrome Association (BSA) is pleased to share an important milestone in our effort to improve cancer care for individuals with Bloom syndrome: the completion of the first two clinical Virtual Tumor Board (VTB) discussions.
These meetings mark an early but meaningful step toward a coordinated, expert-informed approach to cancer care for our community. For many years, families and clinicians have navigated Bloom syndrome–associated cancers without access to specialists familiar with the unique treatment sensitivities associated with this condition. This initiative demonstrates what is possible when that expertise is brought together.
The Hesch Hope Project: Why This Work Matters
The Virtual Tumor Board is part of the Hesch Hope Project, inspired by the life of Jason Hesch. Jason’s experience navigating multiple cancer diagnoses highlighted the challenges families face when expert guidance is fragmented or unavailable.
As Jason’s mother, Paula Hesch reflected on the meaning of this effort, noting that the Virtual Tumor Board “reflects the mission of the Hesch Hope Project: to ensure that families facing rare and complex cancers have access to coordinated, expert guidance.” While this resource was not available during Jason’s own treatment, she shared that “seeing it take shape now affirms his legacy and our commitment to improving outcomes and support for others.”
Jason’s story continues to guide this work, not only in the pursuit of better outcomes, but in the commitment to ensure that no family feels alone when facing complex cancer decisions.
Leadership and Governance of the Virtual Tumor Board
The Virtual Tumor Board is a formal deliverable of the BSA’s Research Council, developed as part of the Council’s mandate to strengthen clinical guidance, evidence generation, and research infrastructure for Bloom syndrome.
Clinical and scientific leadership of the VTB is provided by:
- Vivian Y. Chang, UCLA – serving as the U.S.-based clinical lead, and
- Ramsay Bowden, University of Cambridge – serving as the international scientific lead.
Both Dr. Chang and Dr. Bowden are members of the BSA’s Research Council and have played central roles in shaping the VTB’s scope, structure, and phased implementation. Their leadership ensures that the VTB reflects best practices in oncology, genetics, and rare-disease research, while remaining firmly grounded in patient-centered clinical care.
What Happened in the VTB?
The first session was conducted as a retrospective review of two clinical cases and the second session reviewed two active cancers. De-identified cancer cases were reviewed by a multidisciplinary group of clinicians with expertise in oncology, genetics, cancer predisposition syndromes, and Bloom syndrome.
The discussion followed the framework of a traditional molecular tumor board: reviewing the clinical history, treatment considerations, and key questions from the treating physician, and providing advisory clinical input to support future decision-making. In these initial meetings, no research data were collected, although the team plans to incorporate the option for this in future.
Reflecting on the session, Dr. Chang noted that the conversation extended well beyond treatment decisions alone. “We had a robust discussion around diagnosis, cancer treatment, and cancer screening, as well as psychosocial support through difficult decisions,” she shared, adding that she was struck by “how many engaged clinicians from six different countries came together with a shared commitment to learning from one another.”
Dr. Bowden echoed this sentiment, highlighting both the breadth and depth of participation. “It has been fantastic to see such broad-ranging international engagement from clinicians across different specialties,” she said. “Following in-depth case discussion, there was clear enthusiasm for continued collaboration and future meetings.”
The VTB used a draft clinical intake form developed jointly by UCLA and the BSA to ensure the discussion was structured, efficient, and clinically meaningful. The purpose was to test workflows and confirm that the VTB model delivers value to treating clinicians.
Clinical Focus Now, Research Later
It is important to emphasize that these sessions- and all current VTB activity – operate solely as a clinical consultation service.
The research component of the Virtual Tumor Board will be launched this year when appropriate Institutional Review Board (IRB) approvals are in place. At this time:
- Participation does not involve research
• Participation does not require enrollment in the upcoming International Bloom Syndrome Registry (IBSR)
This distinction is intentional and reflects the BSA’s commitment to ethical oversight, patient choice, and regulatory compliance.
Looking Ahead: The Full BSA Virtual Tumor Board Launching in 2026
Beginning this year, the Bloom Syndrome Association plans to formally launch the full Virtual Tumor Board program, pending IRB approval for the research component.
Once launched, the program will include two clearly separated tracks:
- Clinical Consultation Track (Non-Research)
This track will remain focused exclusively on supporting patient care. Treating clinicians will be able to submit cases and receive expert, multidisciplinary clinical input, regardless of whether the patient participates in research.
- Research Contribution Track (Future; IRB-Approved)
With separate consent and IRB oversight, patients may later choose to allow limited clinical information from VTB discussions to be contributed to the International Bloom Syndrome Registry. This future research pathway is intended to help the community learn from shared experience and improve care over time.
Why a Phased Approach Matters
Launching the Virtual Tumor Board in phases allows the BSA to:
- Ensure the clinical consultation model is effective and responsive
• Finalize consent, privacy, and governance frameworks
• Secure IRB approval before any research data collection begins
• Build a strong foundation for future, ethical research participation
This approach prioritizes patient trust and clinical value first—while laying the groundwork for longer-term learning.
What Comes Next
Over the coming months, the VTB will focus on:
- Completing IRB review for the future research component
• Finalizing integration with the International Bloom Syndrome Registry
• Expanding the expert VTB clinician panel
• Preparing for a broader clinical rollout
We are excited to invite clinicians worldwide to participate in the BSA-led Virtual Tumor Board, beginning with the clinical consultation track and expanding thoughtfully from there. The current plan is for VTB meetings to be held quarterly, with the next meeting to be held in the spring.
With Gratitude
We are deeply grateful to the UCLA Multidisciplinary Bloom Syndrome Clinic for partnering on this effort, to the clinicians who contributed their time and expertise, and to the families whose support makes the Hesch Hope Project possible. The development and launch of the Virtual Tumor Board have been made possible through generous support from donors across the Bloom syndrome community, including critical funding raised through the 2025 Million Dollar Bike Ride.
Above all, we hold deep respect and gratitude for every individual with Bloom syndrome who has faced cancer in the past, those who are navigating it today, and those who may face it in the future. Their experiences – shared and unshared – are the reason this work exists, and they remain at the center of our commitment to improve care, knowledge, and support. This moment represents progress – and a promise – to the entire Bloom syndrome community.