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About Us
| Mission | History | Medical Advisory Board | Financial Reports | Patient Stories |
 
Our Mission
The Mastocytosis Society is a 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

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.

 
Our Founding Members (Our current Board of Directors)
We are grateful for the efforts of every person who has helped to build this organization. Today's accomplishments are built on the foundations laid by previous volunteers.
 
Bill Hingst — Founding Chairman
Linda Buccheit — Second Chairman & Founding Member
Olive Clayson — Third Chairman & Founding Member
Kris Forest — Fourth Chairman
Bill Abbottsmith — Founding Member
Iris Dissinger — Founding Member
William "Joe" Palk — Founding Member
 
Juanita Anderson
Denise Baune
Jane Clark
Diana Coleman
Karen Curtiss
Ivy Diton
Marcia Gordon
Jess Hobart
Joyce McEntire
Regis "Gigi" Park
Joan Passmore
Elizabeth Punsalan
Ruth Samson
Margaret Thomas
Deborah Wallack
 
We thank the above individuals for their vision of starting an organization to support people with mastocytosis and mast cell related disorders. We hope that all who follow are able to uphold the wonderful caring examples they set.
 
 
Medical Advisory Board
 
The Mastocytosis Society would like to extend a heartfelt thanks to the following doctors and pharmacists for donating their time to serve on our Medical Advisory Board:
 
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
 
Finance Reports
 

The Mastocytosis Society Budget 2010 [PDF]
TMS Budget Actual 2009 [PDF]
TMS Audit 2008 [PDF]

 
 
 
 
 
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16th Annual Conference
October 21-24, 2010
Tucson, Arizona
(details

mastocytosis awareness ribbon
Check this out!
upcoming support group meetings

The Mastocytosis Society can benefit by your purchases through the folowing links:
iGive.com
iGive.com
Facebook Causes
The Story of
Winny Ninny Poo Poo


Story of WInny Ninny Poo Poo
GoodSearch: You Search...We Give!
yourcause.com
(formerly mycause.com)
We Look to You — Giovanni Lamanna CD
Please also check out our Online Store!
Contact our Fundraising Chair with any questions or suggestions
2010 National Organization Member
National Organization of Rare Diseases


InkHead Promotional Products
Thank you to inkhead for providing promotional products for our 2009 Conference
   
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