BEBRF Funds Research

BEBRF FUNDS RESEARCH

At the heart of BEBRF’s mission is a commitment to finding answers. Through the generosity of our donors and supporters, BEBRF continues to fund research that helps us better understand blepharospasm, improve diagnosis, and move closer to better treatments for those living with this disorder.
This year, BEBRF is proud to support $194,824 in research funding for three innovative projects exploring important questions surrounding blepharospasm, including what happens around the eye, how we measure symptoms, and what factors may contribute to the development of this condition.
Every research grant brings us one step closer to understanding blepharospasm and finding new ways to improve the lives of those affected.

Looking Closer at Changes Around the Eye

Dr. Lilangi Ediriwickrema
University of California, Irvine

Project: Assessing Periocular Hemodynamics in Blepharospasm Using Spatial Frequency Domain Imaging

Dr. Ediriwickrema was awarded a $75,000 research grant to study changes in blood flow and tissue characteristics around the eyes of people with blepharospasm using advanced imaging technology.

By taking a closer look at what is happening around the eye, this research may provide valuable insight into the biological changes associated with blepharospasm and help researchers better understand the condition.

Exploring New Ways to Measure Blepharospasm

Dr. Hyder A. Jinnah
Emory University

Project: Computer Vision Assessment of Blepharospasm

Dr. Jinnah was awarded a $74,824 research grant to explore the use of computer vision technology to assess blepharospasm symptoms.

Developing more objective ways to measure symptoms could help researchers better understand disease severity and evaluate treatment outcomes in the future.

Searching for Clues About What Causes Blepharospasm

Dr. Giovanni Defazio, MD, PhD
Aldo Moro University of Bari, Bari, Italy

Co-Investigator: Prof. Alfredo Berardelli
Sapienza University of Rome and IRCCS Neuromed Institute

Project: Extensive Searching for Environmental Risk Factors for Adult-Onset Idiopathic Blepharospasm

Dr. Defazio and Prof. Berardelli were awarded a $45,000 research grant to examine possible environmental factors that may be associated with the development of adult-onset idiopathic blepharospasm. Understanding why blepharospasm develops remains one of the biggest questions facing our community. This research may help uncover i

Research Brings Hope
Behind every research project is a community of patients, families, and supporters who believe answers are possible.
Because of your support, BEBRF can continue investing in research that expands our understanding of blepharospasm and helps move us toward a future with better treatments and improved quality of life.
Together, we are funding hope, one discovery at a time.

The Benign Essential Blepharospasm Research Foundation (BEBRF) announces the retirement of Charlene Hudgins as Executive Director and welcomes Angel Roberts as the Foundation’s new Executive Director.

After many years of dedicated service to BEBRF and the blepharospasm community, Charlene is retiring from her role as Executive Director. Throughout her time with the Foundation, she has helped guide BEBRF’s work and remained committed to supporting individuals and families affected by blepharospasm and related disorders.

BEBRF is grateful to Charlene for her years of service, dedication, and commitment to the Foundation and its community. We wish her all the best as she begins this new chapter.

As BEBRF looks to the future, we are pleased to announce that Angel Roberts will assume the role of Executive Director.

Angel brings new energy and perspective to the position, and BEBRF looks forward to working with her as the Foundation continues its mission of providing education and support, advancing research, and serving the blepharospasm community.

While this marks a change in leadership, BEBRF’s commitment to its mission and to the people it serves remains at the heart of everything we do.

Please join us in thanking Charlene for her years of service and welcoming Angel Roberts to her new role as Executive Director.

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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Join the BEBRF community in Memphis, Tennessee, on November 13–14, 2026, for the BEBRF Annual Symposium at the Hilton Memphis.

Registration is now open for this special gathering of patients, caregivers, physicians, researchers, and friends from across the blepharospasm community. The weekend will include opportunities to learn from experts, connect with others who understand the journey, and explore the latest information on diagnosis, treatment, research, and resources.

The weekend begins with a Meet & Greet on Friday evening, November 13, followed by the full Symposium on Saturday, November 14.

We are also pleased to welcome Dr. Mark LeDoux, Ph.D., M.D., as Program Director for the 2026 Symposium. Dr. LeDoux brings extensive experience in movement disorders, patient care, research, and clinical education, and will help guide a program designed to provide meaningful information for patients, families, and clinicians.

Whether you are newly diagnosed, have been part of BEBRF for decades, or support someone living with blepharospasm, we invite you to join us in Memphis for a weekend of education, encouragement, and community.

The BEBRF Annual Symposium is free and open to the public.

Register for the 2026 Symposium and Meet & Greet

We look forward to seeing you in Memphis!

With heavy hearts, the Benign Essential Blepharospasm Research Foundation mourns the passing of Mary Lou Thompson, a beloved member of the BEBRF family and a person whose life was deeply woven into the history of this organization.

Mary Lou was a truly special part of the BEBRF story.

As the daughter of our founder, Mattie Lou Koster, Mary Lou carried forward her mother’s vision and devoted more than three decades of her life to supporting people living with blepharospasm.

She believed deeply in the power of community and connection. Through her leadership, compassion, and unwavering dedication, Mary Lou helped ensure that patients and families had a place to find information, encouragement, and support — and that no one facing blepharospasm would ever have to feel alone.

Those who knew Mary Lou remember her as a passionate advocate, a kind friend, and a true force of nature with a wonderful warmth, energy, and determination. She gave her heart and soul to BEBRF and to the people this organization serves.

One of Mary Lou’s greatest wishes was to make sure that no one ever forgot the name Mattie Lou Koster.

We haven’t.

And we never will.

Mary Lou’s legacy lives on through every patient who finds support, every volunteer who carries the mission forward, and every person who discovers they are not alone.

We are forever grateful for her years of service, her compassion, and the lasting impact she made on this community.