Dear Ewing Sarcoma Institute Community,
As we mark our first full year of operation, we are proud to reflect on what ESI has accomplished – and even more energized by what lies ahead. The year has been focused on laying the foundation: organizing our scientific infrastructure, launching global collaborative initiatives, and taking concrete steps toward changing outcomes for Ewing sarcoma patients around the world.
This milestone feels especially meaningful as it coincides with the birthday of Rett Nearburg, whose memory and fighting spirit are the heart of this organization. July 1 is both a celebration and a commitment – to the work that carries his legacy forward.
Establishing A Global Collaborative Network
A key achievement of this year is the creation of an international, collaborative medical and scientific network. ESI has convened researchers, clinicians, patient advocates, and scientific leaders across the United States, Europe, and Australia – united around a shared mission to accelerate discovery and improve outcomes for patients with Ewing sarcoma. This network is not simply a roster of names; it is an active, engaged community that is already producing outcomes.
The International Task Force on Relapsed Ewing Sarcoma
The cornerstone achievement of this year was the launch of the Ewing Sarcoma Institute International Task Force on Relapsed Ewing Sarcoma. This effort brings together leading experts from across the globe to establish, for the first time, published consensus guidelines on the design and execution of clinical trials for patients with relapsed Ewing sarcoma.
These consensus guidelines will serve as a foundational reference for the field – shaping how clinical trials are structured, how endpoints are defined, and how the global community approaches treatment development for patients who currently have far too few options. With a publication target of early 2027, this work represents ESI’s most significant contribution to date toward transforming outcomes for relapsed Ewing sarcoma patients.
Listening to Those Who Matter Most
Throughout this year, the voices of patients and families have remained central to our work. Patient and family advocate representation within the Task Force ensured that lived experience shaped our scientific priorities. Their courage, generosity, and willingness to engage in this process are a constant reminder of why this work matters.
Looking Ahead
With a robust scientific infrastructure in place, a growing global network, and landmark collaborative work underway, ESI is well-positioned to continue accelerating progress. Our subcommittees are developing additional initiatives, and the Task Force manuscript will bring ESI’s work to the broader scientific and medical community. The foundation has not just been laid – it is being built upon, actively and with purpose.
Gratitude and Momentum
None of this would have been possible without you. To our board members, scientific advisors, Task Force participants, patient advocates, and generous supporters: your belief in ESI’s mission is the force behind every milestone we have reached. Your support and generosity make it possible for ESI to convene the right people, ask the right questions, and pursue the science that this patient community so urgently needs.
As we enter our second year, we do so with gratitude and momentum in equal measure. We look forward to continuing this work – deepening our collaborations, advancing our programs, and accelerating the scientific progress that will one day transform the outlook for every patient diagnosed with Ewing sarcoma.
Help us carry this momentum forward. Your gift to the Ewing Sarcoma Institute – whether made in honor of a loved one, in celebration of a survivor, or in memory of someone deeply missed – becomes part of this community’s ongoing story, and part of the solution.
Here’s to a year of meaningful impact ahead – made possible by supporters like you.
With gratitude,
The Ewing Sarcoma Institute Team
For more information about the Ewing Sarcoma Institute, research opportunities, or to get involved, visit www.ewingsarcoma.org or contact us at info@esinst.org.
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