A Note from the Research Chair

March 2019

Happy Spring (for those of you in the Northern Hemisphere)!

Our TMS Research Team has been hard at work on a variety of exciting initiatives! See the Research Committee Activities page for a listing of some of our key projects. A big one, the 2019 TMS Mast Cell Activation Syndrome (MCAS) Patient Survey, has been a great way for us to share the collective MCAS patient voice. In September, our Research group attended a Mast Cell Activation Syndrome (MCAS) Meeting at the National Institutes of Health, where we presented data from this survey, and data was also recently presented as a poster at the American Academy of Allergy, Asthma and Immunology (AAAAI) Annual Meeting (February 2019, San Francisco, CA)-see the link above for more information and a link to the survey poster.

Last October, I attended the European Competence Network on Mastocytosis (ECNM; www.ecnm.net) Annual Meeting in Salerno, Italy, where, immediately prior to the ECNM meeting, TMS hosted a planning meeting with US-based physicians in preparation for the American Initiative in Mast Cell Diseases (AIM) Inaugural Physician/Investigator Meeting (to be held May 4-5, 2019). AIM will be a network of mast cell disease centers, intended to be expanded throughout the Americas. A limited number of travel scholarships are available for young investigators and for physicians based in North, Central and South American countries outside of the US (abstract submission for poster presentation required; submission deadline 4/1/19). If you are a physician/investigator who is interested in attending the AIM meeting, or would like additional information about AIM, please email research@tmsforacure.org.

The American Society of Hematology (ASH) Annual Meeting was in December in San Diego, CA. TMS had a booth with dedicated, enthusiastic volunteers, and I was able to attend some of the medical/scientific sessions and participate in some meetings focused on TMS initiatives.

The AAAAI Annual Meeting is always full of activity for TMS. We had Research, Education and Advocacy teams in attendance, with an amazing, very hard-working booth staff, and members of our Research group attending sessions, hosting a final in-person planning meeting for the Inaugural AIM Meeting with those attending the AAAAI, attending the AAAAI Mast Cell Disorders Committee Meeting, and participating in a variety of other meetings related to various TMS initiatives, in addition to presenting the MCAS Patient Survey poster noted above.

The TMS Research group is also heavily involved in planning activities for our 2019 TMS Patient/Caregiver Conference (May 1-3, 2019 in the San Francisco Bay Area). This conference will be 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.

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!

LET’S START TODAY!

Susan Jennings, PhD

Chair, TMS Research Committee

research@tmsforacure.org

 

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2019 TMS Conference