BEBRF began with a group of living room meetings in the spring of 1981 in the Beaumont, TX home of Founder Mattie Lou Koster. Frustrated because there was so much misinformation and very little knowledge or awareness about blepharospasm – even among medical practitioners, Mattie Lou was determined to make things better. After those initial meetings, BEBRF was formally chartered as a Texas non-profit corporation on July 23, 1981, and shortly thereafter the first Support Group Meeting was held in Tulsa, OK.
On January 13, 1982, due to Mattie Lou’s persistence, the Wall Street Journal ran a front-page article about blepharospasm, Mattie Lou, and BEBRF. Hundreds of patients diagnosed themselves after reading the article and called the Wall Street Journal who forwarded the calls to Mattie Lou. The text of that article is posted on the BEBRF Facebook page. That year, the first one-page BEBRF Newsletter was printed and mailed, and patients from 26 states attended the first BEBRF Seminar hosted by Dr. Robert Wilkins in Houston, TX.
BEBRF attended its first medical academy, the American Academy of Ophthalmology in Chicago, to help spread awareness of blepharospasm to physicians in 1982. Soon afterward, BEBRF attended the American Academy of Neurology for the same reason, and then BEBRF continued attending those academies annually with a booth in the Exhibition Hall. Annual attendance at Neuro-Ophthalmology and Optometry Academies was added in 2018. With funds available, the BEBRF plans to continue attending these Academies annually.
Also in 1982, BEBRF held its first Medical Conference for doctors and patients in Birmingham, AL. In 1984, Dr. Alan Scott directed a nationwide study of 48 doctors who treated 442 blepharospasm patients experimentally with injections of Oculinum, a botulinum toxin. As a result, Oculinum became the preferred treatment for blepharospasm/Meige.
The following year, Dr. Joseph Jankovic published the first double-blind, placebo-controlled trial of botulinum toxin in blepharospasm. This was the first research grant funded by BEBRF. That same year the book Advance in Ophthalmic Plastic and Reconstructive Surgery, Vol 4: Blepharospasm was edited and published by Dr. Stephen Bosniac. This book reviewed everything known about the anatomy, physiology, pharmacology, and therapy of blepharospasm and related disorders. Copies of this book were sent to medical schools. In 1994 this book was reprinted with a new title Blepharospasm and Related Disorders: A Historical Review of Etiology and Treatment, and this new soft-cover book was made available to patients and doctors.
In January of 1986, shipments of Oculinum ceased when Dr. Scott was unable to find an insurance company willing to provide affordable liability insurance. Oculinum had not been approved by the FDA, and blepharospasm patients found themselves functionally blind again. Later that year, BEBRF went international when it held its fourth Medical Conference in Barcelona, Spain with Dr. Eduardo Tolosa as the host.
In 1989, the FDA issued the product and facility licenses to market Oculinum as a treatment for blepharospasm and strabismus, with Allergan Pharmaceuticals as its distributor. Oculinum was later renamed Botox®.
Mary Lou Thompson, Mattie Lou’s daughter, became Board President in 1992. Dr. Mark Hallett of the National Institutes of Health and BEBRF Medical Advisory Board chair led three Brainstorming Seminars on blepharospasm for doctors from around the world in 1995, 2000, and 2006. In 2001, Dr. Padma Mahant and Dr. Mark Stacy conducted significant research on the “Risk Factors and Familial Occurrence of Blepharospasm Study”.
In 2007, the Dystonia Advocacy Network was formed by BEBRF, Dystonia Medical Research Foundation, National Spasmodic Dysphonia Association, and Spasmodic Torticollis/Dystonia to speak with one voice in addressing advocacy issues on behalf of the dystonia community. This advocacy continues to the present day on the local, state, and federal levels.
In 2009, the Dystonia Coalition was formed. This is a collaboration of medical researchers and patient advocacy groups working to advance the pace of clinical and translational research in dystonias. BEBRF is a charter member of the Dystonia Coalition. BEBRF has participated in, supported, and co-funded Dystonia Coalition projects on Natural History and Bio-specimen Repository for Primary Dystonia and the Global Dystonia Patient Registry (both since 2010). In addition, BEBRF and the Dystonia Coalition co-funded the Project 4 study, “Development and Validation of Clinical Diagnostic Guidelines and A Novel Severity Score of Primary Blepharospasm” (2014). Later, BEBRF elected to fund the four-year Project 4: Blepharospasm Study.
The FDA approved the botulinum toxin Xeomin® from Merz Pharmaceuticals for the treatment of blepharospasm and cervical dystonia in 2010. That same year, BEBRF held its first Symposium for patients in Salt Lake City, UT, hosted by Dr. Bradley Katz and Dr. Kathleen Digre. Until the pandemic, an annual Symposium was held in a different city every year.
Mary Lou Thompson retired in 2016, and the Board of Directors voted to hire a professional non-profit manager. Charlene Hudgins, with more than three decades of non-profit managerial experience, was hired as the first Executive Director in January 2017. Nilda Rendino followed Mary Lou as Board President until March 2020, when Nilda was succeeded by Heidi Coggeshall.
Since that first Support Group Meeting in Tulsa in 1981, the support group network has grown to be nationwide. During the pandemic, BEBRF successfully transitioned to Zoom Support Group Meetings which will continue even after in-person meetings resume. Likewise, when the 2020 Symposium in Philadelphia had to be postponed due to the pandemic, BEBRF instituted Zoom Webinars every two to three months on a variety of topics to maintain its commitment to providing education to BEBRF patients and physicians. It is anticipated that these Webinars will continue into the future, even when the annual Symposiums resume. Videos for presentations from the Symposiums and Webinars on a vast array of topics are available through the BEBRF website.
As of 2021, BEBRF has funded over 70 research projects amounting to almost three million dollars. Since BEBRF receives no governmental funding, all the funds to pay for these research projects come directly from donations made to the Foundation. These projects have been significant in moving forward the search for the cause, treatments, and cure for blepharospasm. In fact, it was a BEBRF-funded research project that led to FDA approval of botulinum toxin as a treatment for blepharospasm.