EWING SARCOMA INSTITUTE INC

Programs

1. General program - in its founding year, the institute mapped out the full landscape of stakeholders essential to advancing progress against ewing sarcoma. Leadership met with researchers, clinicians, scientists, industry representatives, and patient advocates, and engaged directly with key ewing sarcoma organizations, partners, and initiatives working in the field. Through these efforts, the institute developed a comprehensive understanding of the current state of ewing sarcoma research and care, and identified opportunities to strengthen coordination across traditionally siloed groups. This foundational work established the collaborative architecture upon which the institute's research funding and scientific programming will be built in subsequent years.

   $9,816 spent
   46% of program spending

2. Community & parent engagement - in its founding year, the institute launched its community engagement program by uniting the historically fragmented ewing sarcoma advocate and philanthropic communities in shared purpose. The institute met with dozens of foundations focused on ewing sarcoma and pediatric cancer to build philanthropic alignment and identify coordinated funding strategies. It also engaged directly with more than twenty ewing sarcoma patients and families to ensure the patient and caregiver voice informs the institute's research priorities and programmatic direction. Through these efforts, the institute transformed a dispersed landscape of advocacy and giving into an organized community positioned to drive collective impact.

   $6,544 spent
   31% of program spending

3. Strategic advisory board - a defining accomplishment of the institute's founding year was the identification, recruitment, and formal seating of its strategic advisory board, comprised of twelve of the world's leading experts in ewing sarcoma. Institute leadership mapped the global landscape of scientific and clinical expertise in the disease and engaged top researchers and clinicians across leading institutions. The resulting board represents the foremost authorities on ewing sarcoma biology, translational research, and clinical care, providing the institute with unparalleled scientific guidance on this rare disease. Establishing the strategic advisory board in the first year provided the scientific credibility and expert oversight needed to guide research investments and programmatic priorities from the outset.

   $4,908 spent
   23% of program spending

The 3 programs described on its FY2024 Form 990-EZ. Program spending in total: $21,268.