Benign Essential Blepharospasm Research Foundation

💙 45 Years of Hope 💙

Forty-five years ago today, one woman saw a need that could not be ignored and decided to do something about it.

In the spring of 1981, Mattie Lou Koster was nearing 70 years old and living with blepharospasm herself. At a time when so little was known about this rare disorder, even among medical professionals, she saw the confusion, frustration, and lack of answers that patients were facing.

She could have simply accepted her diagnosis as something she had to endure.

But Mattie Lou chose a different path.

She didn’t have an office. She didn’t have a building, a staff, a website, a database, or a social media presence.

She had a desire to help others who were facing the same uncertainty, and she had her home in Beaumont, Texas.

So she opened her doors.

She welcomed people in, listened to their stories, and brought together individuals who were searching for answers and support. Those early living room meetings became the foundation of the Benign Essential Blepharospasm Research Foundation.

On July 23, 1981, BEBRF was officially chartered as a Texas nonprofit corporation. Soon after, the first BEBRF Support Group Meeting was held in Tulsa, Oklahoma.

What began in one living room grew into a worldwide community of patients, caregivers, physicians, researchers, volunteers, and supporters, all connected by hope.

Today, we celebrate Mattie Lou Koster, the people who carried her vision forward, and everyone who has been part of the BEBRF journey over the past 45 years.

That compassion, that willingness to open her home to others, became a legacy of hope that continues 45 years later.

🎂 Happy 45th Birthday, BEBRF!

💙 1981–2026 | 45 Years of Hope

Today, we said goodbye to Mary Lou Thompson.

During her service, Psalm 121:1-2 was shared — words that felt especially meaningful for our blepharospasm community.

Mary Lou spent more than three decades helping people find hope, answers, and support through the challenges of this disorder. Her compassion, dedication, and unwavering commitment touched countless lives.

The legacy she built continues through every patient, family member, researcher, and friend who has been part of the BEBRF community.

Rest peacefully, Mary Lou. Your legacy of hope and compassion will continue for generations to come.

With heavy hearts, the Benign Essential Blepharospasm Research Foundation mourns the passing of Mary Lou Thompson.

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.

In lieu of flowers, Mary Lou’s family has requested that memorial contributions be made to the Benign Essential Blepharospasm Research Foundation, the organization she devoted so much of her life to supporting. If you would like to honor Mary Lou’s memory by continuing the mission she cared so deeply about, you can make a gift here:

https://bebrf.app.neoncrm.com/forms/3

If you had the privilege of knowing Mary Lou, working with her, or being touched by her dedication to the BEBRF community, we invite you to share a memory or a few words in the comments below.

Thank you, Mary Lou, for carrying forward a mission of hope, compassion, and connection. Your legacy will continue. 💙

📼🕶️💗 I ❤️ THE 80s 💗🕶️📼

Two iconic 80s-inspired tees. One important conversation.

💗 Pretty in Blink
An 80s classic remix with a wink.

🕶️ I Wear My Sunglasses at Night
Not just a cool look—sometimes it’s functional.

On the front, it’s nostalgia. On the back, it’s awareness.

Each shirt features blepharospasm.org on the back, turning curiosity into connection and simple questions into understanding.

Not just throwback tees—conversation starters with purpose.

Every purchase supports BEBRF’s mission: research, education, awareness, and support for people living with blepharospasm.

Totally rad. Still.

Order before June 30 and save 20% with code: ILOVETHE80S

Shop now: https://www.bonfire.com/store/bebrf/

📸 FROM THE BEBRF VAULT

Thirty-five years ago today, on June 18, 1991, BEBRF founder Mattie Lou Koster received the Jefferson Award for Outstanding Public Service, one of the nation's most prestigious honors recognizing community service and civic leadership.

This award bears the signature of Jacqueline Kennedy Onassis, who co-founded the Jefferson Awards, along with former U.S. Senator Robert Taft, Jr.

Long before social media and online support groups existed, Mattie Lou was building a community for people affected by blepharospasm and advocating for greater awareness, support, and research.

Today, we're proud to celebrate this remarkable recognition and the lasting legacy of a woman whose vision continues to impact lives around the world.

💙 Thank you, Mattie Lou.

Born June 12, 1912, BEBRF founder Mattie Lou Koster is remembered today on her birthday.

This photo shows her at her desk in the early days of BEBRF, when the foundation was just beginning in her home. What she started there grew into the Benign Essential Blepharospasm Research Foundation - a lasting source of support, education, and connection for the blepharospasm community.

Her vision continues to guide our work today, and her impact is still felt throughout BEBRF.

In honor of her legacy, you can support BEBRF’s ongoing mission of research and patient support. https://bebrf.app.neoncrm.com/forms/3

🚨 NEW BEBRF VIDEO AVAILABLE🚨

Non invasive Neurostimulation Treatments for Dystonia - Brian Berman, MD, MS, FAAN presenting live from 2025 BEBRF Annual Symposium at Sheraton Mission Valley Hotel, San Diego, CA. Recorded November 1, 2025.

Non invasive Neurostimulation Treatments for Dystonia - Brian Berman, MD, MS, FAAN Non invasive Neurostimulation Treatments for Dystonia - Brian Berm...

🚨 NEW BEBRF VIDEO AVAILABLE🚨

What if one of the biggest barriers to better treatments for blepharospasm and dystonia isn’t the treatment itself—but how we measure whether it works?

Outcome Measures for Research
David A. Peterson, PhD
2025 Program Director, BEBRF Annual Symposium
Associate Research Scientist, UC San Diego Institute for Neural Computation; Director, Computational Neurology Center (UC San Diego)

Dr. Peterson’s work focuses on computational neuroscience and machine learning approaches to movement disorders, with an emphasis on improving how blepharospasm and dystonia are objectively measured in research and clinical care.

This presentation explores how outcomes are currently measured in clinical studies - and why that process plays a critical role in how new treatments are evaluated and developed.

Topics include:
• Clinical rating scales used in trials
• Patient-reported outcome measures
• Emerging tools such as video analysis, EMG, and digital approaches

At the core is a simple idea: better measurement leads to better science - and ultimately better treatments.

🎥 Watch here:
👉 https://youtu.be/s5VgdLBKj08

Outcome Measures for Research - David Peterson, Phd Outcome Measures for Research: David Peterson, Phd presenting live from 2025 BEBRF Annual Symposium at Sheraton Mission Vailley San Diego, San Diego, CA, US...