Mattie Lou Koster

In 1981, The Benign Essential Blepharospasm Research Foundation was established by a blepharospasm patient, Mattie Lou Koster, out of her distress over a lack of interest, information and treatment of blepharospasm. Her prime objective was "to undertake, promote, develop and carry on the search for the cause and a cure for BEB, Meige and other related disorders."
Above text taken from the 2005 "Blue Book".