TMS Mast Cell Activation Syndrome Initiatives Update

Jun 30, 2018

Good day,

The Board and committee volunteers at TMS have been increasingly aware of frustrations arising in several areas, specifically with difficulty accessing care and for both recognition and validation of Mast Cell Activation Syndrome (MCAS). Please know that we share your concerns and these issues are foremost in our minds every day. We are working hard to fight on the behalf of all patients affected by mast cell diseases.

We are pleased to share a few updates on exciting TMS initiatives which will help address these issues:

First, in September, Susan Jennings, PhD, TMS Research Chair, Jan Hempstead, RN, Patient Care Coordination Chair and I, Valerie Slee, RN, BSN, TMS Chair, are traveling to Rockville, MD to meet with many of the physicians in the field for a special one day meeting addressing unmet needs in patients with MCAS. The meeting is entitled Mast Cell Activation Syndrome Workshop. It was organized jointly by Alkis Togias, MD, Branch Chief, Allergy, Asthma and Airway Biology, NIH/NIAID, Joshua Milner, MD, Chief of the Laboratory of Allergic Diseases, NIH/NIAID and Mariana Castells, MD, PhD, Professor of Medicine, Harvard Medical School, Dept. of Allergy and Immunology, Brigham and Women’s Hospital, Boston. TMS has been asked to present the perspective of patients affected by MCAS. Susi will do the presentation, and Jan and I will be there to answer questions from the clinicians’ perspective, as nurses who deal directly with patients. These physicians are using their own time to address many of the issues that we are all concerned about regarding patients with MCAS, which I also have been diagnosed with. Susi and I are finishing up a book chapter for Cem Akin, MD, PhD, in collaboration with international patient support group leaders, after which we will be conducting a brief survey together with Jan to assist us in presenting the most up to date information possible to this eager group of physicians. We will also consult with the TMS Support Group Chair for any relevant information.

As for access to care, this is a huge and overwhelming problem which requires vision, a long-term commitment and lots of funding to fix. But-we have already begun! On May 1-3, 2019 we are holding a TMS Patient/Caregiver Meeting in the San Mateo/Foster City, CA area, and this meeting will be followed by the nearby American Initiative in Mast Cell Diseases (AIM) Physician and Investigator Meeting, May 4-5, 2019, in Stanford, CA, which also will serve as the launch of the AIM network. This will be similar to the European Competence Network on Mastocytosis in Europe, in that AIM will facilitate the establishment of comprehensive Centers of Excellence and smaller, more specialized Reference Centers (which might have just one specialty area relevant to mast cell diseases), first throughout the United States, and ultimately expanding to Canada, Central and South America. We have been in many meetings planning this for years, and more recently have been working with the AIM organizing committee, chaired by Jason Gotlib, MD, MS, Stanford Cancer Center, and Cem Akin, MD, PhD, University of Michigan, to ensure the success of these conferences. TMS is working hard with this team, along with TMS Patient/Caregiver Conference Chair, Sandy Johnson, our Fundraising Chair, Courtney Rabb, and the professional conference planners from Steppe Solutions, in preparation to raise the large amount of money necessary to go forward with this dual conference next spring. Establishing these centers, and then further fundraising to provide fellowships to train physicians to specialize in mast cell diseases, is how we will address the unmet needs patients encounter in accessing care.

We welcome your help, your volunteerism, your support, and your donations. If you know of any donors who might support our efforts to further these initiatives to help all patients with mast cell diseases, please let us know!

Thank you,

Valerie M. Slee, RN, BSN, TMS Chair, and TMS Board and Committees