Forty-five years ago, one woman’s determination to find answers changed the lives of thousands of people living with blepharospasm. What began as a personal search for understanding became a global community built on hope, support, education, and advocacy.
On July 23, 1981, the Benign Essential Blepharospasm Research Foundation (BEBRF) was officially chartered as a Texas nonprofit corporation, marking the beginning of a mission that continues to impact patients, families, physicians, and researchers around the world.
That mission began with Mattie Lou Koster, a woman who understood firsthand the challenges of living with blepharospasm. In the spring of 1981, nearing the age of 70, Mattie Lou faced a condition that was still poorly understood, leaving many patients with more questions than answers. Rather than accept the uncertainty, she chose to take action.
Without an office, staff, website, database, or formal resources, Mattie Lou created a place where people could come together. From her home in Beaumont, Texas, she opened her doors to others living with the same struggles. She listened to their experiences, connected families, and created a space where patients could find understanding and support.
Those early gatherings in her living room became the foundation for what would become BEBRF. Shortly after the organization’s official formation, the first BEBRF Support Group Meeting was held in Tulsa, Oklahoma, beginning a network that would continue to grow across the country and around the world.
Over the past 45 years, BEBRF has become a source of hope and connection for the blepharospasm community. It has provided patients with resources, caregivers with support, researchers with collaboration, and individuals facing the challenges of this disorder with the reassurance that they are not alone.
This milestone is a celebration of everyone who has contributed to the BEBRF journey: the patients who shared their stories, the caregivers who provided support, the physicians and researchers who advanced understanding, the volunteers who strengthened the mission, and the supporters who helped carry the vision forward.
As BEBRF celebrates its 45th anniversary, we honor Mattie Lou Koster’s compassion, courage, and commitment to helping others. Her willingness to open her home and bring people together created a legacy that continues to inspire generations.
What started as one woman’s search for answers became a worldwide community united by hope.
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