Our VisionThe Mast Cell Disease Society envisions a world where mast cell diseases are understood, treatable, and no longer a barrier to living life to its fullest.Our mission is to champion the advancement of research, education, and patient care to empower and unite the mast cell disease community.Our ValuesThe principles behind everything we do.IntegrityMaintaining the highest level of professionalism and ethics while working towards our mission.ExcellenceLeading the advancement of mast cell disease knowledge and research towards better treatment and diagnostic options and for an eventual cure.CompassionTreating every member of our community with compassion and benevolence.InclusionShowing our community dignity and respect to ensure everyone feels welcome, supported, and validated.CommitmentPatients first. Unwavering and enduring support to improve the lives of everyone within the mast cell disease community.Our StoryHow a small group of patients built a community—and changed what was possible.Our FoundingThe Mast Cell Disease 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.First Support GroupThe 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!Early DaysUntil 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.ProgressFortunately, 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 MembersToday’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 diseases 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!Linda Buchheit*William Hingst*Joseph Palk*David Hoover*Elizabeth Punsalan*Iris Dissinger*Bill Abbottsmith*Olive Clayson*Jessica HobartRuth SampsonJoyce McEntireMargaretThomasStephanie ShawJane ClarkKathy FavoriteMishele CunninghamKristin ForestJuanita AndersonMarcia GordonDenise BaunRegis ParkEmily TidballDiana ColemanCandace VanAukenSusan ManchesterCindra CareyMichael ZorskaDeborah WallackLen LevendaJoan PassmoreEmily MenardLisa KennyJody BachimanErin CunianRegina RentzWanda HermannLisa SterlingSandra FrostBill RichersEthan BordeauxRachael ZinmanCelesteThomasonMichelle KressElizabeth SmithJim McKeeKaren CurtissStephen ReyBonnie SicaRita BarlowStacy SheldonGail BarberaJan HempsteadValerie Slee
Our FoundingThe Mast Cell Disease 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.
First Support GroupThe 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!
Early DaysUntil 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.
ProgressFortunately, 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!
