Kathy Brewer finally learned the name of the disease that had made her husband, Gary, so ill. But the answer came after his death.
For years, Gary’s health declined without a diagnosis, despite extensive evaluations at major medical centers. Only an autopsy revealed Erdheim-Chester Disease. That answer could no longer help Gary, but Kathy’s determination to help other families would become part of a continuing story.
In 2008, Kathy and other caregivers connected online in a group initially representing just six patients. They began creating a website where families could find information about a disease few people had heard of. Those beginnings helped build the Erdheim-Chester Disease Global Alliance.
Families needed more than a disease name. They needed help understanding what came next, finding knowledgeable care, and connecting with people who understood their questions.
That purpose continues today. Our Year-End Campaign, Help Our Families Find Answers, invites you to support research, education, awareness, and patient support. Your generosity helps keep information and connections available for someone newly diagnosed, a caregiver seeking guidance, or a patient looking for a physician with ECD experience.
Donations will be matched up to a campaign total of $90,000. Your gift helps carry forward the reason this community began: making sure families have somewhere to turn.
Please give at fundecd.org and share this story with someone who would like to help.