The Mast Cell Disease Society, Inc. Announcement

The Mastocytosis Society, Inc. (TMS) was founded in 1994 by a group of dedicated patients and volunteers. Over the last 26 years, TMS has been committed to benefiting the lives of those with mast cell diseases through research, education and advocacy. We are grateful that new knowledge has been gained and that our community of patients, physicians, researchers and families has grown tremendously.

Our community is now comprised of patients with many forms of mast cell diseases and the TMS Board of Directors and Medical Advisory Board believe it is critically important our name reflects our entire community which currently includes patients with all forms of Mastocytosis, Mast Cell Activation Syndromes and Hereditary Alpha Tryptasemia.

It is for this reason, that we are so thrilled to announce that The Mastocytosis Society, Inc. will be changing its name to: The Mast Cell Disease Society, Inc. (TMS)

In the next few months, the process to change over to the new name will take place and as of June 30, 2020 all business and activities will function under
The Mast Cell Disease Society, Inc. (TMS)

Over the years, one thing has remained true: our success is grounded in our community of support. We are so grateful for each of you and we hope you will join in our excitement as we build for our future together!

History of TMS and Evolution of Name Change

From The Mastocytosis Society, Inc. to The Mast Cell Disease Society, Inc.

1994 to 2020

Valerie M. Slee, Chair and the TMS Board of Directors

Our decision to move to a name that is more representative of the patient community that we represent is an important one. When TMS was founded in 1994, only one mast cell disease was recognized, and it was called a disorder. Systemic mastocytosis (SM), a clonal disorder resulting in the proliferation and accumulation of abnormal mast cells, was very often not diagnosed in patients suffering from it, and it was unknown in the most prestigious medical centers. But there was a significant cluster (21-50 at different times)1 of patients with SM being carefully studied at a clinic at Brigham and Women’s in Boston, and at a few other centers around the country. In 20012 a group of dedicated and very interested physician investigators gathered to write consensus criteria for Systemic Mastocytosis, criteria that is still the basis of what we use today. TMS worked closely with these physicians, and both the TMS current Chair, Valerie M. Slee, RN, BSN and Research Chair, Susan Jennings, PhD became part of the American Academy of Allergy, Asthma and Immunology Mast Cell Disorders Committee. Through working with an international group of physicians on this committee, TMS was able to become part of the discussions about emerging patient trends.

During the next decade, there emerged a group of patients who presented with many of the same symptoms of mast cell mediator release as those patients with SM, without the symptoms of mast cell proliferation and accumulation, but who did not always demonstrate elevated tryptase. Many of these patients suffered from frequent episodes of life-threatening anaphylaxis and severe disability from symptoms of mast cell activation. It became apparent that new proposed criteria were necessary for this group of patients, and the term mast cell activation syndrome (MCAS) emerged. New proposed criteria for MCAS was written in 2010-123,4 by the same consensus committee that wrote the criteria in 2002 for SM. What we still do not know is how the genetic mutation for SM is triggered to develop and how the signaling to activate mast cells becomes disordered in patients with mast cell activation syndrome. Just a few years later, an excited group at NIH/NIAID discovered a group of patients presenting with symptoms of mast cell activation, connective tissue disorders and dysautonomia.5 When studied, a duplication or triplication of the tryptase gene was identified in the blood of these patients.6 Further studies showed that some individuals had the duplication or triplication without presenting with symptoms. An entire new mast cell disease was discovered, driven by an entirely new cause, but still resulting in endless suffering for those patients who are symptomatic. Hereditary alpha tryptasemia, or HaT, was born.

There is much to learn about mast cell diseases, and everything we learn about mast cells contributes to our knowledge about these diseases. TMS is proud to continue to embrace and support all mast cell diseases with equal fervor and commitment of our time, energy and resources. Our Board is currently comprised of representatives of each of the three main mast cell diseases and some sub-variants, so we have wonderful input on how we can do the best that we can for our patients and families in our community. We have built on the excellent first steps of our founders to offer mast cell disease patients, regardless of their disease name, a safe harbor for support and information. In addition to doing disease specific research, and age group specific research (pediatric and adult), TMS will also be encouraging

research7 into how a normal mast cell works, a topic that we know very little about, and from which we can learn much to help everyone in our community. We are deeply committed to all of our members. Please join us in unity of helping to conquer mast cell diseases.

References

1. Horan R. Systemic Mastocytosis: Retrospective Review of a Decade’s Clinical Experience at the Brigham and Women’s Hospital. J. Invest. Dermatol. 1991 Mar; 96 (3 Suppl):5S-13S; discussion 13S-14S, 60S-65S.

2. Valent P et al. Diagnostic criteria and classification of mastocytosis: a consensus

proposal. Leuk. Research. 2001 July; Issue 7, Pages 603-625.

3. Akin C, Valent P, Metcalfe DD. Mast cell activation syndrome: proposed diagnostic criteria. J Allergy Clin Immunol. 2010 Dec;126(6):1099-104 e4.

4. Valent P, Akin C, Arock M, Brockow K, Butterfield JH, Carter MC, et al. Definitions, criteria and global classification of mast cell disorders with special reference to mast cell activation syndromes: a consensus proposal. Int Arch Allergy Immunol. 2012;157(3):215-25.

5. Lyons JJ, Sun G, Stone KD, et al. Mendelian inheritance of elevated serum tryptase associated with atopy and connective tissue abnormalities. J Allergy Clin Immunol. 2014;133(5):1471-1474.

6. Lyons JJ, Yu X, Hughes JD, et al. Elevated basal serum tryptase identifies a multisystem