Mission Statement / History of Organization
Our Mission Statement
The Mastocytosis Society is a 501(c)3 nonprofit organization dedicated to supporting patients affected by Mastocytosis or Mast Cell Activation Disorders as well as their families, caregivers, and physicians through research, education, and advocacy.
History of Organization
The Mastocytosis Society, Inc. (TMS) was founded in 1995 by Bill Abbottsmith, Linda Buchheit, Olive Clayson, Iris Dissinger, Bill Hingst, and Joe Palk. At that time very little was known about Mastocytosis, so these pioneering individuals sought to fill a massive void with some answers to their multitude of questions about this rare disease. They found one another through NORD, sheer determination and extensive research.
The first support group meeting was held in Baltimore at the Inner Harbor in 1994 and was attended by Linda Buchheit and Bill Hingst. The second meeting was held the following year at Linda Buchheit’s home in Ohio. Fourteen members attended that year. Little did they know how fruitful their efforts would be and what a lifeline they would become as more and more patients joined each year!
Until 1990 many patients diagnosed with Mastocytosis 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 resulting in patient death. 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 the patient had often 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 forms of Mastocytosis as having a high associated mortality rate. Fortunately, that prognosis has improved as more patients are diagnosed and treated sooner, and more physicians research and treat this disease. Today, we know that pediatric patients have greater than a 75% chance of outgrowing their disease at or before puberty, and adults with indolent systemic mastocytosis can have a near normal life expectancy if they avoid triggers and take their medication!
Our Founding Members
Today’s accomplishments are built on the foundations laid by the early volunteers, and we are grateful for their efforts. TMS is where it is today because of the seeds that they planted in 1994 and in the early years. Below are some of the earliest members, but there have been many more champions who have served their fellow patients and families affected by mastocytosis and mast cell activation disorders by volunteering for TMS. We salute you!
THANK YOU to all of our past board members as they are our strong foundation for all the wonderful and exciting things happening now and in the future for TMS!
* Founding Board Members