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About Us

The Ewing Sarcoma Institute is dedicated to radically improving outcomes for Ewing sarcoma patients by uniting the global community to accelerate collaborative scientific discovery and the development of breakthrough treatments.

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Our Story

Our story is rooted in a mission to revolutionize Ewing Sarcoma research—inspired by patients, driven by collaboration, and fueled by innovation.

Founded in 2000

The Rett Nearburg International Ewing Sarcoma Research Symposia, launched in 2000, brought together leading researchers and clinicians across seven global convenings. Hosted at institutions such as the Children’s Hospital of Los Angeles, Dartmouth College, and the Children’s Hospital of Philadelphia, these events laid the foundation for ESI.

7 Symposiums from 2000-2023

The highly interactive format of the seven symposiums convened leading Ewing sarcoma experts from around the world to openly discuss unpublished data, removing competitive barriers and building an atmosphere of trust and collaboration that formed the basis for the conception of ESI at the 7th symposium.

ESI - 2023

The Ewing Sarcoma Institute was conceived at the 7th Rett Nearburg International Ewing’s Sarcoma Symposium in 2023. At this convening, it was determined that a more structured and sustained effort to promote and support collaborative research involving all stakeholders was needed to substantially improve outcomes for Ewing Sarcoma patients.

Our Strategic Advisory Board

James Amatruda
Chief, Division of Pediatric Hematology-Oncology & Director, Cancer and Blood Disease Institute, Children's Hospital Los Angeles
James F. Amatruda, MD, PhD, is Director of the Cancer and Blood Disease Institute and Chief of the Division of Pediatric Hematology-Oncology at Children’s Hospital Los Angeles; Professor of Pediatrics and Medicine at the Keck School of Medicine; and Associate Director for Pediatric Oncology, Norris Comprehensive Cancer Center, University of Southern California.
Carol Basso
Patient/Family Advocate, Texas 
Carol has been a dedicated member of the Ewing Sarcoma community for nearly 15 years. She became involved in this fight when her youngest daughter, Anna, was diagnosed with Ewing sarcoma at the age of 16.
Rashmi Chugh
Clinical Professor in Hematology and Oncology, University of Michigan
Rashmi Chugh, MD, is a Professor of Internal Medicine in the Division of Hematology/Oncology at the University of Michigan Rogel Comprehensive Cancer Center, where she serves as Service Chief, Sarcoma/Melanoma Section Head, and Sarcoma Clinical Research Team Co-Leader.
Olivier Delattre
Director of the SIREDO Oncology Center and the research unit director of the Cancer, Heterogeneity, Instability and Plasticity (CHIP) unit, Inserm/Institut Curie (France)
Dr. Olivier Delattre is MD-PhD, trained in pediatric oncology. He heads the SIREDO Pediatric Oncology Center at Institut Curie which gathers clinicians and scientists to accelerate the development of new therapeutic strategies for pediatric cancers.
Julia Glade Bender
Pediatric Hematologist-Oncologist, Vice Chair for Pediatric Clinical Research, Memorial Sloan Kettering Cancer Center
Dr. Julia Glade Bender is a Full Member (Professor), Vice Chairman for Pediatric Clinical Research and co- Medical Director of the Lisa and Scott Stuart Center for Adolescent and Young Adult (AYA) Cancer at Memorial Sloan Kettering Cancer Center (MSK).
Thomas Grünewald
Professor, University of Heidelberg (Germany)
Thomas Grünewald is principal investigator at the German Cancer Research Center (DKFZ) and Hopp-Children’s Cancer Center (KiTZ), and Professor of Translational Pediatric Sarcoma Research at the University of Heidelberg.
Elizabeth (Beth) R. Lawlor
Associate Director, Ben Towne Center for Childhood Cancer & Blood Disorders Research, Seattle Children’s Research Institute
Dr. Elizabeth (Beth) R. Lawlor is a Professor of Pediatrics and Adjunct Professor of Pathology at the University of Washington School of Medicine, the Associate Director of the Ben Towne Center for Childhood Cancer and Blood Disorders Research at Seattle Children’s Research Institute.
Poul Sorensen
Johal Chair in Childhood Cancer Research, The University of British Columbia  
Dr. Poul Sorensen, a native of Denmark, is a board-certified molecular pathologist and Professor of Pathology at the University of British Columbia (UBC) in Vancouver, Canada.
Kim Stegmaier
Chair of Pediatric Oncology at Dana-Farber Cancer Institute and Associate Chief of the Division of Hematology/Oncology at Boston Children’s Hospital
Kimberly Stegmaier, MD, Professor of Pediatrics at Harvard Medical School and the Ted Williams Investigator at Dana-Farber Cancer Institute, has advanced the application of genomics to drug and protein target discovery for pediatric malignancies.
Sandra Strauss
Professor of Medical and TYA Oncology and Honorary Consultant Medical Oncologist, University College London 
Sandra Strauss is Professor of Medical and Teenage Young Adult (TYA) Oncology and a Consultant Medical Oncologist, specialising in the systemic treatment of bone and soft tissue sarcoma.
Jeff Toretsky
Professor, Departments of Oncology and Pediatrics Division Chief, Pediatric Adolescent and Young Adult (AYA) Hematology/Oncology, Georgetown University
In August 2017, Dr. Jeffrey Toretsky was appointed Chief of the Division of Pediatric Hematology and Oncology. He received his MD in 1988 from the University of Minnesota.

Institutions Represented on Our Strategic Advisory Board

Institutional Collaborators

Our Approach

The Ewing Sarcoma Institute was formed through a catalytic philanthropic gift from Charles Nearburg. Under the guidance of the leading Ewing Sarcoma researchers from across the globe, and in community with patients, families, and advocates, ESI is designed exclusively to accelerate research, expand trials, and ensure that every Ewing Sarcoma patient has access to the best possible care and emerging therapies.

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Drive Scientific Discovery to Accelerate New Treatment Options

Unite the global research community to establish a strategic, high-impact research agenda.

Accelerate Clinical Trial Development and Access to New Therapies

Accelerate the discovery, development, and accessibility of more effective treatments for patients with Ewing Sarcoma.

Empower Patients and Families with Knowledge and Support

Build a deeply connected, welcoming community where patients, families, researchers, and advocates come together to support one another, share knowledge, and take action.
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A 3-Pillar Approach to Ewing Sarcoma Research

The Ewing Sarcoma Institute operates on a three-pillar approach: advancing scientific discovery, accelerating clinical trials, and empowering patients and families. By uniting global experts, driving innovation, and expanding access to emerging treatments, we are transforming the future of Ewing Sarcoma care.

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Our Work

Rett's Story

Rett Nearburg (1983–2005) lived each day to the fullest throughout his eleven-year battle with Ewing Sarcoma. His journey was emboldened by his love of art, music, motorcycles, and civil liberties, and his unwavering strength and courage continue to inspire the mission of ESI. Rett volunteered for numerous experimental treatments, never gave in to self-pity, and faced every challenge with humor and grace.

To learn more about Rett’s life, his legacy and his art, please visit rett.org.

Our Work

Meet Our Team

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