Please join me in welcoming Diane Schriner as the new ECD Global Alliance President.
Diane has been an integral part of the ECDGA Board of Directors since 2018 and has served as Vice President since 2021. During that time, she has exemplified extraordinary compassion, insight, and strength. A seasoned accountant with experience in both large corporations and small businesses, Diane brings exceptional strategic and organizational skills to this leadership role. But beyond her professional expertise, her dedication to the ECD community is deeply personal—her husband is living with Erdheim-Chester Disease. Diane has walked the same path of uncertainty, advocacy, and hope that many of us know all too well. Her ECDGA leadership is both personal and powerful.
In her own words:
I am honored to accept the role of President of the Erdheim-Chester Disease Global Alliance (ECDGA), and I do so with a deep sense of responsibility, hope, and personal conviction.
This is not just a leadership opportunity—it is a deeply personal mission. My husband is an ECD patient, and through our journey together, I have witnessed the challenges, uncertainty, and strength that define the lives of those affected by this rare disease. I’ve also seen the power of community, advocacy, and science in guiding us toward a brighter future.
ECDGA has been a vital part of that support system, and now I’m humbled to contribute at an even deeper level.
I step into this role motivated by the unwavering resilience of patients, caregivers, and researchers alike. Together, we can continue building a future where no one faces Erdheim-Chester Disease alone.
Thank you for entrusting me with this responsibility. I look forward to standing alongside each of you as we push forward with courage, compassion, and purpose.
It is with heartfelt emotion and excitement that I, Kathy, step down as President. Since the ECDGA’s founding, I have had the great honor of serving this community- of walking beside you in moments of hardship, discovery, and incredible progress.
This decision comes after deep reflection and with immense gratitude—for the privilege of witnessing all we have accomplished together. From our humble beginnings in 2008, when a few of us gathered online in search of answers, to a global community supporting over 1,000 families across 76 countries— together we have built something extraordinary.
This is not goodbye. I remain fully committed to the mission of the ECDGA and will continue to stand beside this community I love so dearly. I extend my full support to Diane as she steps into this role. Her empathy, vision, and leadership will be a guiding light for our path forward, and I am excited for all that we will accomplish under her stewardship.
Thank you for the honor of serving as your President. I am forever proud of what this community has accomplished by working together.
With deep appreciation and love,
Kathy Brewer