rare connect
When Kathy Brewer said “I will never stop searching,” she didn’t yet know that her words would spark a global movement. But in the face of personal tragedy, they became a promise—not only to her beloved husband Gary, but to countless others around the world who would one day face the same rare disease that took his life: Erdheim-Chester Disease (ECD).
A Journey Rooted in Love
Gary Brewer was a dedicated educator in Louisiana when mysterious health issues began to take over his life. At first, doctors believed his symptoms—high blood pressure, kidney complications, joint pain—were linked to job stress. But despite years of medical visits and increasing complications, no clear answers emerged. Kathy became his tireless advocate, tracking every detail of Gary’s condition in the hope of finding a breakthrough.
In 2004, after years of health decline, Gary received a kidney transplant from his son. Even then, his health continued to worsen. On July 3, 2007, Gary passed away without a diagnosis. One month later, the answer arrived: Erdheim-Chester Disease.
Finding Strength in Community
Heartbroken but determined, Kathy kept her promise to Gary. She refused to let his experience be in vain. In early 2008, she connected online with two other women—Carol and RuthAnn—whose husbands were also fighting ECD. In April, they held their first virtual chat, determined to build a space where no one would ever have to feel alone in this fight again.
From that first conversation, a movement began. The group quickly grew from six families to dozens, and then hundreds. Kathy organized a teleconference with Dr. Razelle Kurzrock of MD Anderson Cancer Center, which led to the creation of the very first ECD-focused website. Though her friend Nick had never built a website before, he offered his help. They launched the site later that year, planting the seeds of what would become the Erdheim-Chester Disease Global Alliance (ECDGA).
From Grassroots to Global
In August 2009, with support from fellow families and volunteers, the ECDGA officially became a 501(c)(3) nonprofit. From its humble beginnings in DeRidder, Louisiana, the organization now supports more than 600 families across 60 countries. It has funded over $700,000 in research, helped establish 33 care centers, and continues to advocate for earlier diagnosis, better treatment, and a future free from ECD.
Why Kathy’s Story Still Matters Today
Kathy’s story is more than a powerful origin—it’s a call to action. The legacy of one woman’s love, perseverance, and refusal to give up has changed lives around the world. And it continues to inspire those newly diagnosed, caregivers searching for answers, and researchers striving to unlock the mysteries of ECD.
No one should have to face a rare disease alone. That’s why getting involved—whether by donating, volunteering, or simply showing up—matters now more than ever.
Join Us in Barcelona
This year, the spirit of connection that started in an online chat room in 2008 will come full circle in Barcelona, Spain, at the ECDGA 2025 Patient & Family Gathering. On May 26, patients, families, researchers, and clinicians will gather at the Renaissance Barcelona Fira Hotel for a day of learning, sharing, and support.
It’s more than just an event—it’s a lifeline, just like the one Kathy dreamed of creating. If you’ve ever felt alone, confused, or overwhelmed by ECD, this gathering is for you. If you’ve ever wanted to better understand your loved one’s experience, this is your chance to listen, learn, and connect. And if you’ve been looking for hope, you’ll find it in every handshake, every hug, every shared story.
Because from the very beginning, ECDGA was built on one unshakable truth: we are stronger together.
The Erdheim-Chester Disease Global Alliance (ECDGA) does not provide medical advice, diagnoses, or treatments. All content is for informational purposes only. Please consult with a healthcare provider for medical concerns.
