The Benign Essential Blepharospasm Research Foundation

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The history and development of the Benign Essential Blepharospasm Research Foundation (BEBRF) begins with Mattie Lou Koster. Mattie Lou began experiencing the symptoms of benign essential blepharospasm (BEB) at the age of 61, and over the next 7 years, she saw 12 different physicians before being correctly diagnosed with BEB. After receiving her diagnosis, Mattie Lou dedicated her life to helping other patients with BEB acquire a diagnosis and subsequent treatment. After reading every medical journal article that had been published on BEB, she was reported to have written a letter to each medical school in the United States in search of new knowledge and potential treatments for BEB. When she only received return correspondence from 2 medical schools, Mattie Lou decided that she would dedicate herself to educating patients and physicians on BEB. Before the early 1980s, many physicians considered BEB to be a psychological disease, and many patients were treated with psychotherapy, antipsychotic medication, shock therapy, and biofeedback. On the basis of her own experience with the commonly delayed diagnosis and lack of treatment associated with BEB, Koster founded BEBRF to bring attention to BEB and help search for a cure.1,2
On July 23, 1981, BEBRF acquired nonprofit status in the state of Texas, and Mattie Lou was elected the first president of the organization. Nonprofit status enabled donations to BEBRF to be tax-deductible.1,2 The year 1981 was also a pivotal one for the treatment of BEB. Dr Alan Scott published the first report detailing the successful use of botulinum toxin (trade name: Oculinum) in strabismus, and in the same report, he also suggested the use of Oculinum for blepharospasm.3 Also in 1981, Dr Richard Anderson first described the “Anderson myectomy” surgical procedure for relief of the symptoms associated with BEB.4
The forward momentum of BEBRF continued into 1982 when Mattie Lou successfully lobbied Jerry Bishop, a reporter at the Wall Street Journal, to write an article describing BEB. To Mattie Lou and Jerry surprise, the article made the front page of the Wall Street Journal on January 13, 1982.5 The article documented the signs and symptoms of blepharospasm and noted some of the currently available treatments for the disease, including the Anderson myectomy surgery. The Wall Street Journal received an overwhelming number of phone calls following publication of the article from readers who had self-diagnosed themselves with BEB. The burden of phone calls was so significant that the Wall Street Journal began forwarding the calls to Mattie Lou house, and her kitchen became the unofficial office of BEBRF.1,2 Anecdotally, Dr Anderson reported that having written over 30 scientific papers and book chapters on blepharospasm, 1 paragraph on the front page of the Wall Street Journal generated more attention for BEB and subsequently brought his practice more new BEB patients than all of his scientific articles and book chapters combined.6
Shortly after the Wall Street Journal article, Mattie Lou created and distributed the first edition of the BEBRF newsletter. Since then, Mattie Lou and BEBRF have continued to publish mothly newsletter which has presented the most current developments in BEB science and treatment, while also helping to connect BEB patients and physicians. Later in 1982, BEBRF held its first educational seminar in Houston, Texas. Dr Robert Wilkins hosted the event, and patients from 26 states attended. A year later, the first exhibit of blepharospasm was held at the American Academy of Ophthalmology meeting in Chicago, Illinois. This exhibit was instrumental in further disseminating the key features, diagnostic criteria, and treatment options for blepharospasm to the international ophthalmology community, as a whole.
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