The Mastocytosis Society, Inc. (TMS) was founded in 1995 by Bill Abbottsmith, Linda Buchheit, Olive Clayson, Iris Dissinger, Bill Hingst, and Joe Palk. Back then, very little was known about Mastocytosis, and so these pioneering individuals sought to fill a massive void — to find some answers to their multitude of questions about this rare disease. They found one another through sheer determination and extensive research.

The first support group meeting was held in Baltimore at the Inner Harbor in 1994. Those in attendance were Linda Buchheit and Bill Hingst. The second meeting was held at Linda Buchheit’s home in Ohio the following year. Twice the number of Mastocytosis patients attended. Little did they know how fruitful their efforts would be and what a lifeline they would become!

Many patients who were diagnosed with Mastocytosis in the 1970s, 1980s, and early 1990s were given a very grim prognosis. Up until that time, Mastocytosis was not often considered when physicians were making a differential diagnosis, and many cases were completely missed until the patient died. At that point, signs of the disease were then discovered on autopsy; however, because so little was known about Mastocytosis, it was presumed that Mastocytosis was one of the causes of death, when in fact, often the patient had died of other causes, and the Mastocytosis was an incidental finding! On the other hand, more advanced cases of aggressive Mastocytosis were also recognized during post-mortem exams, leading pathologists to identify all Mastocytosis as having a high mortality rate associated with it. Fortunately, that prognosis has improved as more patients are diagnosed and treated sooner, and more physicians research and treat this disease.

Dr. Cem Akin

Brigham & Womens Hospital, Boston, MA

Dr. Philip Askenase

Section of Allergy and Clinical Immunology, Dept. of Internal Medicine, Yale University School of Medicine

Dr. Frank Austen — Honorary member

Brigham and Women’s Hospital, Boston, MA

Dr. Leonard Bernstein

Bernstein Allergy Group, Cincinnati, OH

Dr. Joseph Butterfield

Mayo Clinic, Rochester, MN

Dr. Mariana Castells

Brigham and Women’s Hospital, Boston, MA

Dr. Luis Escribano

Hospital Virgen del Valle, Toledo, Spain

Dr. Norton J. Greenberger

Brigham & Womens Hospital, Boston, MA

Dr. Richard Horan

Brigham and Women’s Hospital, Boston, MA

Dr. Philip Miner

University of Oklahoma, College of Medicine, Oklahoma City, OK

Dr. Larry Schwartz

Medical College of Virginia, Virginia Commonwealth University, Richmond, VA

Dr. Theoharis Theoharides

Tufts University School of Medicine, Boston, MA

Dr. Peter Valent

University of Vienna, Vienna, Austria

Dr. Srdan Verstovsek

MD Anderson Cancer Center, Houston, TX