The Erdheim-Chester Disease Global Alliance (ECDGA) is proud to open nominations for two important annual honors that recognize individuals making a meaningful impact in the ECD community through medical awareness, advocacy, compassion, and service.
Together, the Mark Heaney Memorial Awareness Award and the ECDGA Community Champion Award celebrate the diverse ways people improve the lives of those affected by Erdheim-Chester Disease (ECD) and adult histiocytic disorders.
Nomination Deadline: February 1, 2026
Mark Heaney Memorial Awareness Award
The Mark Heaney Memorial Awareness Award honors an individual—most often a medical professional—who has made a significant contribution to raising awareness of Erdheim-Chester Disease within the medical community.
Improved awareness leads to earlier diagnosis, reduced suffering, and better patient outcomes. This award recognizes those who advance ECD understanding through research, education, clinical leadership, and advocacy.
“Dr. Mark Heaney believed that science alone wasn’t enough—it had to be paired with compassion and a deep commitment to patients. This award honors his legacy by recognizing those who, like Mark, use both their expertise and their heart to make a real difference in the lives of people with ECD.”
— Kathy Brewer, Founder, ECD Global Alliance
Celebrating Past Recipients
- 2025 – Julien Haroche, MD, PhD
A pioneering researcher whose work helped define the multi-organ nature of ECD and establish critical diagnostic criteria used worldwide. - 2024 – Ronald Go, MD
A Mayo Clinic leader in population-based ECD research and co-author of the NCCN Guidelines for Histiocytic Neoplasms, advancing standardized care. - 2023 – Gaurav Goyal, MD
A clinical researcher whose real-world data, international collaborations, and guideline contributions have improved diagnostic awareness and care delivery.
ECDGA Community Champion Award
The ECDGA Community Champion Award honors a patient, caregiver, volunteer, or advocate who demonstrates extraordinary dedication to supporting and strengthening the global ECD community.
Community Champions uplift others through peer support, awareness-building, advocacy, fundraising, and outreach—creating hope, connection, and lasting impact.
Honoring Our Community Champions
- 2025 – Father Charles Balnaves
- 2024 – Barry Atnip
These individuals remind us that one person’s compassion and commitment can positively impact an entire community.
How to Submit a Nomination
- Nominations for both awards are submitted through a single online form.
- You may nominate someone for either award
- Nominations may be submitted by patients, caregivers, colleagues, or community members
- Award recipients will be announced at the ECDGA Meeting in Birmingham, Alabama on April 30, 2026
Nomination Deadline: February 1, 2026
Together, let’s honor the individuals who advance awareness, strengthen community, and improve lives across the ECD world.