A Note from the Research Chair

July 2019

Hello Mast Cell Disease Community!

Our TMS Research Team continues to work hard on a variety of exciting initiatives! See the Research Committee Activities page for a listing of some of our key projects. We are thrilled to announce that Matthew Hamilton, MD (Brigham and Women’s Hospital/Harvard University, MA), and colleagues, have been awarded the 2019 research grant offered jointly by TMS and the American Academy of Allergy, Asthma and Immunology (AAAAI). The 2019 TMS Mast Cell Activation Syndrome (MCAS) Patient Survey has been a great way for us to share the collective MCAS patient voice. Data from this survey has now been presented at an MCAS Meeting at the National Institutes of Health (September 2018), as a poster at the AAAAI Annual Meeting (February 2019, San Francisco, CA; poster at above link), and most recently at the American Initiative in Mast Cell Diseases (AIM) Inaugural Physician/Investigator Meeting (May 4-5, 2019, Stanford University, CA).

The TMS Research group was also heavily involved in planning activities for our TMS Patient/Caregiver Conference (May 1-3, 2019 in the San Francisco Bay Area). This conference was a great opportunity to learn about mast cell diseases, participate in support group sessions and workshops, and interact with other patients/caregivers, our TMS team and many of our key mast cell disease specialist physicians, in a casual, relaxed setting. It was wonderful to meet so many of you in person!

Our Patient/Caregiver Conference was partnered with the AIM Inaugural Physician/Investigator Meeting and many leaders from TMS worked closely with the AIM Steering Committee to make the inaugural meeting of that important clinical/research network possible. Physicians from multiple countries participated in the meeting and were happy to support the formation of AIM. AIM will be a network of mast cell disease centers, intended to be expanded throughout the Americas, and our AIM physicians/investigators look forward to a productive partnership with the European Competence Network on Mastocytosis (ECNM; www.ecnm.net).

Last weekend I attended the Society for Pediatric Dermatology Annual Meeting and hosted an information table for TMS. TMS was one of three patient advocacy groups invited to have a booth at this conference, because our area of focus was presented in a special talk by Melody Carter, MD (NIAID/NIH). Over the last 9 months, I have also had the honor to be part of a team representing TMS during the American Society of Hematology (ASH) Annual Meeting and was able to attend the ECNM Annual Meeting in Salerno, Italy to continue to develop relationships with mast cell disease physicians and researchers around the world and to help keep our Research Committee up to date on the latest research in mast cell diseases.

Our TMS website also contains information on two TMS articles published in 2018 (on the 2010 Mast Cell Disorder Patient Survey and on Patient Perceptions in Mast Cell Disorders). We are still waiting to receive proofs to review for a third article, on International Mast Cell Disease Patient Support and Advocacy, which was written in collaboration with some of our international colleagues. We will let you know when that article has made it through the publication process! All of these articles, as well as our presentations on the MCAS Patient Survey, highlight the importance of patient participation in research surveys, education, support and advocacy activities.

None of these projects would have developed without the support of generous donors, who have helped fund all of the activities of our entirely VOLUNTEER-LED organization! Please consider donating today to allow us to continue our important work together!

Our TMS GENERAL FUND supports TMS initiatives and activities, including our RESEARCH Committee work, EDUCATION and SUPPORT of patients, caregivers and physicians, and our ADVOCACY on Capitol Hill. Our TMS RESEARCH FUND supports the amazing work done by leading mast cell disease researchers. If we work together and support each other, we can make a HUGE difference for our Mast Cell Disease Community in all of these areas!


Susan Jennings, PhD

Chair, TMS Research Committee


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