On September 10, 2024, The EHE Foundation held a virtual meeting of our Scientific & Medical Advisory Board (SMAB). The meeting aimed to welcome new members, review current research projects, and discuss future needs and goals to advance EHE research.

The meeting began with a warm welcome to new members of the SMAB:

• Tom Chen, MD, PhD, Medical Oncology, National Taiwan University
• Greg Cote, MD, PhD, Medical Oncology, Massachusetts General Hospital Cancer Center
• John Lamar, PhD, Molecular and Cellular Physiology,  Albany Medical College

Their expertise and scientific contributions will play a significant role in advancing EHE research.

The assembled group reviewed the Foundation’s mission and strategic priorities which remain focused on finding treatments and a cure for EHE by facilitating collaboration among patients, researchers, and clinicians. To accomplish this, the Foundation will prioritize::

• Aggressively funding and supporting sponsored research
• Facilitating education and collaboration across the EHE community
• Fundraising to ensure the growth and sustainability of the organization

EHE Biobank Progress

The EHE Biobank continues to grow, with 64 consented participants from the US and 42 specimen donations facilitated to date. A primary goal of the EHE Biobank is to develop human-derived EHE model systems that can be used to develop treatments for patients. Currently, four EHE extended cell cultures are in development, and biospecimens from the Biobank have been distributed to four researchers for model development.

Active Projects & Therapeutic Opportunities

Several exciting research initiatives were presented:

• Dr. Silvia Stacchiotti discussed the research program evaluating cytokines and hormones as biomarkers for EHE, a multi-center collaborative project led by the Istituto Nazionale dei Tumori (INT) in Milan, Italy.
• Dr. John Lamar shared his progress on pre-clinical models aimed at identifying druggable pathways.
• Dr. Brian Rubin updated the board on the investigation of CDK inhibitors at the Cleveland Clinic and other research initiatives in his lab.

A key discussion point was how to avoid missing potential therapeutic opportunities due to gaps in data or lack of proper measures. The board discussed the resources needed to close these gaps and ensure research progresses smoothly.

Conclusion

The meeting underscored the importance of research collaboration and highlighted current and near-term opportunities to bring together data, resources, and key stakeholders. 

This meeting marked an important step forward in advancing EHE research and clinical science. Building on patients’ strong participation and passion for contributing to EHE science, the SMAB is dedicated to finding breakthroughs for this ultra-rare sarcoma.