TMS Initiatives and Updates
Report for Annual Meeting open to all members
May 3, 2019
From the TMS Chair, Valerie M. Slee, RN, BSN:
The Mastocytosis Society, Inc. is so very grateful to our members like you, who so generously support our mission and major initiatives. We are jumping into the future with hope, and we are so excited to share our news with all of you. The theme of this conference is Mast Cell Diseases United, which we came up with after the NIH conference last year. It was so apparent to us then that learning about any mast cell disease gives us information about other mast cell diseases. We need to encourage all excellent research initiatives, be it into Cutaneous or Systemic Mastocytosis or its variants, Mast Cell Activation Syndromes or Hereditary Alpha Tryptasemia. Every tidbit we learn can be applied to our knowledge about other mast cell diseases! We are empowered by our unity, and it brings us great strength. We embrace our differences and we provide support for those signs, symptoms and challenges which we share. We accept that diagnostic criteria may not be perfect, and we work cooperatively with physicians towards improving it. Together we can assure excellent care for our future.
We have had an amazing 2018-19! Our support groups have grown exponentially so that we reached over 800 new patients whom we met in person; we have new downloadable graphics on our website for educating patients and caregivers. We have continued to grow our active membership dramatically since eliminating the membership fee (from 600 members in February 2017 to 8200 members now!). We continue to co-fund grants with the American Academy of Allergy, Asthma and Immunology, as well as funding Pediatric Grants on our own. We are pursuing possibly cofounding grants with other support organizations. We are attending numerous medical conferences to educate physicians about mast cell diseases with all new display infographics specifically written for each medical specialty. We are submitting papers for publication frequently, and they are being accepted in respected journals such as Journal of Allergy and Clinical Immunology in Practice. We also wrote two book chapters last summer.at the request of two esteemed physician mast cell experts. We conducted a short term survey on mast cell activation syndrome in preparation for an NIH meeting on that topic in September 2018, and produced such incredible results from that survey that we have already written an abstract on the data which has been accepted by the AAAAI and by AIM. We continue to generate very important data from that survey, from which we are learning about all forms of mast cell diseases. We worked, and continue to work with, with an international patient group to establish October 20 as the first ever Mast Cell Diseases Awareness Day (to be repeated annually). Our patients receive RN moderated help through an online Inspire forum; additionally, patients and families can communicate with each other via our FB support page, which is moderated to observe for any critical issues. We are working with other Lay Organizations of the American Academy of Allergy, Asthma and Immunology to combine resources and collaborative efforts to create one strong voice in Washington on issues which affect us all. Whenever possible, we go green to protect our beautiful planet, reducing paper waste by posting information online rather than printing it and having attendees lug it home, using fuel. And finally, we have been working diligently with a physician steering committee to establish the American Initiative in Mast Cell Diseases (AIM).
AIM, the American Initiative in Mast Cell Diseases, is something we had dreamed about for many years, and it took a lot of ground work on the part of the TMS Research Committee, especially Susi Jennings, to get it started. The goal is to establish a network of treatment and research Centers of Excellence and smaller, more specialized Reference Centers, all for Mast Cell Diseases. The network will start first in the United States, and then will grow to encompass all of North, Central and South America. We will collaborate closely with the European Competence Network on Mastocytosis.
The steering committee, Chaired by Jason Gotlib, MD, MS of Stanford Cancer Center, and Cem Akin, MD, PhD, of University of Michigan Medical Center, also includes Melody Carter, MD, NIH/NIAID, Tracy George, MD, University of Utah and Mariana Castells, MD, PhD Harvard Medical School. TMS representatives who met with the steering committee in the early stages were Susan Jennings, PhD, TMS Research Chair and me. During the last year, all TMS Board members and Committee Chairs have been involved in this enormous undertaking, and we are finally here! After this huge TMS Patient Caregiver meeting in Foster City-San Mateo, CA we will have the Inaugural AIM Investigator Symposium, which is intended to lay the groundwork to launch AIM. Part of the AIM initiative is to educate young physicians with an interest in mast cell diseases in order to assure that our patient population can be assured of increased access to excellent care in the future. To that end, TMS procured grant funding to support young investigator scholarships for physicians to attend the AIM meeting.
The partnered conferences will be held in the San Francisco area, with the TMS meeting in Foster City/San Mateo, and the AIM meeting at Stanford Cancer Center 20 minutes away. Many physicians flying in to speak/participate will be joining both meetings. We, meaning TMS and the AIM physician steering committee, in conjunction with our TMS Treasurer Rosemary Schultz and Fundraising Chair Courtney Rabb, worked together to fundraise more than $323,000 to support this joint meeting. We were supported by many of our loyal industry partners, for which we are very grateful. This will be a momentous meeting that will affect patients and families impacted by mast cell disorders well into the future. Establishment of centers for diagnosis and treatment of mast cell diseases, first in the United States, and then to be inclusive of all of North, Central and South America, will completely transform care for our patient population. Our patients will have access to care, which so far, has been only a dream for many. In addition, AIM is very inclusive in spirit, which will make it easy to be collaborative with the rest of the mast cell disease world.
TMS also has a new advocacy committee, Chaired by Jen Lockhart, who unfortunately is not able to be here today due to her health, and a newly formed Pediatric Committee, which has met to start to formulate its new path. Stacy Sheldon has stepped down as Pediatric Chair, but is still a valuable member of this committee and has a great idea for parent-child support group meet ups going forward. Emily Bolden has taken over as Interim Support Group Coordinator when Cheri Smith stepped down, and we look forward to adding a new Support Group Chair to the Board after this conference. We would like to thank Cheri for her dedication and wonderful years of service. We also have a new Medical Conference Project Manager, Kathy Tomasic, who will be taking over all of the medical conferences, and will work directly with Chantelle Cornwell, our Materials Manager. We have several new members of the Research Committee, too. We are so very grateful for all of these willing and talented volunteers.
Thank you for your ongoing support of The Mastocytosis Society, Inc.
Valerie M. Slee, RN, BSN,
Chair, Board of Directors The Mastocytosis Society, Inc.
From the Interim Vice Chair, Jan Hempstead, RN:
Patient Care Coordination: We have one other part-time RN volunteer who presently provides patient care coordination. TMS volunteer RNs coordinate care and provide education for patients, caregivers, and the medical community about all mast cell disease testing, treatments, triggers, and signs and symptoms. We offer this service through our patient forum, Inspire, (https://www.TMS.Inspire.com) and by email (firstname.lastname@example.org).
We welcome any licensed RN willing to volunteer several hours a week (flexible schedule). Training is provided.
TMS Physician Database: I manage our physician database with the assistance of another volunteer. Please give your physician the link to self-enroll at https://tmsforacure.org/physician-database/
We also sent letters to each physician we met at all medical conferences who diagnose and treat mast cell disease patients, inviting them to join our physician database.
Co-Morbid Coalition: I represent TMS, along with another board member, on the Co-Morbid Coalition, funding research for the co-morbid conditions of EDS, Dysautonomia and MCAS, among other conditions.
From TMS Interim Treasurer, Rosemary Schultz:
- Developed and analyzed expense and budget variance analyses
- Developed and implemented a Funding/Reimbursement Program for patients during the IV Benadryl shortage
- Participated in fundraising, budgeting and planning for the TMS and American Initiative on Mast Cell Diseases (AIM) conferences
- Streamlined the financial reporting, expense analyses, bank reporting, and insurance functions
- Help to develop and implement a multi-year organizational-wide strategic plan
- Develop, monitor and/or manage key aspects of the 2019 TMS and American Initiative on Mast Cell Diseases (AIM) conferences to include planning, budgeting and projection analysis, registration issues, and contract management
- Incorporate the budgeting process into accounting software
- Reorganize and improve the purchase and banking functions
From TMS Secretary, Gail Barbera:
As Secretary, assist TMS with clerical needs, organize meetings, update the website and facebook pages as needed, order printed materials, direct public and member inquiries to appropriate Board members/Committees, and serve as USA liaison on the International Mastocytosis and Mast Cell Diseases Awareness Committee.
As Volunteer Manager, TMS is continually looking for volunteers for various jobs. We are still looking for assistance with IT needs, RNs to assist on Facebook/Inspire/email, graphic designers, grant writers, research committee members, website editors, fundraisers, advocacy workers, etc. If you (or someone you know!) have some talents and time to offer please let us know, we can’t do this without you – we are ALL Volunteers!
As Education Chair, materials and volunteers are organized to exhibit at 4 medical conferences each year, the AAP, AAD, ASH, and AAAAI where our volunteers educate health care professionals from across the country. This year we also exhibited at the NIH for Rare Disease Day in February, a health care fair at Westfield State University MA, and will be at the the Dysautonomia and Ehlers-Danlos Conferences this summer.
Education is also currently supervising Support Groups until we have a new Support Chair, and we have been writing new Guidelines for TMS Leaders to insure the integrity and quality of guidance and information disseminated at any TMS meeting through approval by our Medical Advisory Board and Research Committee. We help moderate all TMS Support Group FB pages, and supply printed materials and ideas for meetings and events. We hope to add a long-requested TMS FB group for 18-30 year olds moderated by a professional counselor to meet the particular needs of young adults with mast cell disease who are navigating the social challenges of dating, college, and new jobs. We also plan to offer Phone-in Support Meetings via Gotomeeting for Homebound Patients. Our past Pediatrics Chair Stacy Sheldon will now be joining the Support Team to organize support meetups for families with young children with mast cell disease across the country. TMS has grown and our Support area will evolve to provide even more for our members!
From TMS Fundrasing Chair, Courtney Rabb:
TMS remains grateful to all of our members and supporters who are the reason we are able to carry out our mission. We are unique and without paid staff, 100 percent of your donations goes to programming, research and ongoing support for patients and families.
We had a very successful February with Rare Disease Month awareness raising activities throughout leading up to the Rare Disease Day on February 28, 2019. Our first ever t-shirt contest and sale was a huge success raising $2,300. As we look beyond the conference in May we are already beginning brainstorming and planning for our 2nd Annual International Mast Cell Disease Awareness Day in October. We look forward to sharing plans with everyone for this day over the summer.
We continue to have many members do their own fundraising and many have turned into annual events – including our annual Wyatt Walk, the Gilley gumbo cook off, and a major Karate Studio fundraiser for TMS. It is amazing to see the creative ways our own members have used to raise funds.
If anyone would ever like to discuss ideas for fundraisers or ways to help us for our upcoming International Day please contact me at email@example.com
We remain so grateful to each of you for your dedication and generous contributions. Nothing that we do would be possible without your commitment which allows us to move research forward, support and advocate for our patient community and help to raise awareness and educate the public.
From Advocacy Chair, Jennifer Lockhart:
TMS Advocacy Committee remains busy as they moved into 2019. The Rare Disease Day events in Washington DC were incredibly successful. We are very grateful to the many TMS members who joined our team to meet with representatives and raise awareness for Mast Cell Diseases and the challenges faced in our community. We continue to focus on initiatives that will range from public policy directly impacting patients and caregivers, to participation and partnering with organizations to raise awareness about Mast Cell Disease. We will also continue to attend meetings of the drug shortage committee as a stake holder this Spring and again in the Fall for the Drug Shortage Meetings in Washington D.C. and continue to dialogue with Pharmaceutical companies in the interim to address short term needs of our patient population. However, we also will maintain the overarching goal in directly addressing with the FDA our unique needs. Our goal is to assure our patients receive the highest priority in terms of need, including long term goals and legislation to protect us from vulnerability in gaps in service. Other initiatives include a one page talking point hand out to streamline our message, particularly for participation in large scale awareness campaigns and the possibility of an Ambassadors committee and Speakers Bureau. The Advocacy Committee is energized and passionate about the new goals of the TMS Advocacy Team and is always grateful to hear from you. If you have questions, suggestions or concerns we encourage you to reach out to advocacy@TMSforacure.org.
From TMS Research Committee Chair, Susan Jennings, PhD:
TMS RESEARCH GRANTS
- A second round of applications for a research grant offered jointly by TMS and the American Academy of Allergy, Asthma and Immunology (AAAAI) for $60,000 were recently reviewed. We hope to announce the awardee within the next month.
- Link to a list of previous TMS research grant awards
ARTICLES PUBLISHED/IN PRESS
- Our second article on the 2010 TMS MCD Patient Survey was published in the Journal of Allergy and Clinical Immunology-In Practice (JACI-In Practice) in August 2018.
- We wrote a chapter on Patient Perceptions in Mast Cell Disorders, invited by the book editor, Dr. Mariana Castells, for the August 2018 Immunology and Allergy Clinics of North America publication on Mastocytosis.
- We worked with an international team of Mast Cell Disease advocates to write a chapter on International Support and Advocacy for Mast Cell Disease Patients and Caregivers for a book on Mastocytosis that physicians would be able to place in their lab coat, published by Springer, invited by Dr. Cem Akin, editor (Submitted and accepted, but not yet published).
- TMS worked with patient advocates from several different mast cell disorder societies around the world (Canada, UK, Australasia, Brazil, Spain).
- This book will also be available in various electronic formats.
2018 MCAS PATIENT SURVEY AND RELATED RESEARCH PRESENTATIONS
- We were invited to give a presentation on Patient Perceptions in MCAS at an MCAS Workshop at the National Institutes of Health (NIH), which was held in September 2018. To prepare for the presentation, TMS conducted an MCAS Patient Survey in August 2018.
- Survey results on data from over 1700 respondents were presented at the workshop.
- Organizers of the NIH MCAS Workshop are working with presenters and break-out session chairs on a manuscript of the workshop proceedings.
- MCAS Survey results were presented as a poster presentation at the 2019 AAAAI Annual Meeting in San Francisco, CA.
- MCAS Survey results were accepted to be presented as a poster at the Inaugural American Initiative in Mast Cell Diseases (AIM) Investigator Conference, being held at Stanford University in May 2019.
- We intend to also publish the MCAS Survey results in a peer-reviewed journal in the future.
AMERICAN INITIATIVE ON MAST CELL DISEASES (AIM)
- In addition to work on our 2019 TMS Patient and Caregiver Conference, we have been working very closely with the Steering Committee of the American Initiative in Mast Cell Diseases (AIM) on the AIM Inaugural 2019 Meeting. AIM will be an American mast cell disease network lead by Dr. Jason Gotlib and Dr. Cem Akin, and is working toward establishment as a result of progress made during our past Mast Cell Disorder Challenges Meetings, hosted by TMS. Our Research Committee has been part of a team focusing on a variety of aspects related to our paired TMS and AIM conferences.
- TMS also hosted AIM planning meetings at the 2019 AAAAI Annual Meeting in February and just prior to the 2018 ECNM Annual Meeting in October, for US physicians attending the ECNM meeting.
TMS BOOTH DISPLAY UPDATES FOR MEDICAL CONFERENCES
- The Research Committee worked with other TMS committees throughout 2018 to update the TMS booth displays for all of the medical conferences TMS attends.
MEETINGS ATTENDED BY RESEARCH COMMITTEE REPRESENTATIVES; SESSIONS, BOOTH WORK:
- AAD (American Academy of Dermatology) Annual Meeting, February 2018, San Diego, CA
- AAAAI (American Academy of Allergy, Asthma and Immunology) Annual Meeting, March 2018, Orlando, FL and February 2019 in San Francisco, CA
- Also attended AAAAI Mast Cell Disorder Committee and Lay Organization meetings
- Held AIM planning meeting with mast cell disease specialists
- ECNM (European Competence Network on Mastocytosis, ecnm.net) Annual Meeting, Oct 2018, Salerno, Italy
- Held pre-ECNM meeting with US physicians attending the ECNM to work on the American Initiative on Mast Cell Diseases
- ASH (American Society of Hematology) Annual Meeting, Dec 2018, San Diego, CA
WRITING AND UPDATING TMS EDUCATIONAL MATERIAL FOR PUBLICATIONS AND WEBSITE
- Performed on an ongoing basis