TMS Initiatives and Updates
~ December 2018 ~
From Jan Hempstead RN, TMS TMS Board of Directors Interim Vice Chair, Patient Care Coordination:
In the late spring, we transitioned to Inspire, a rare disease forum, that recommends an anonymous profile for increased privacy. Inspire is where TMS RNs now answer medical questions related to mast cell disease as well as provide a community for general support.
Patient Care Coordination now has two part-time RN volunteers assisting on Inspire. TMS is always looking for more licensed RNs willing to volunteer and we are willing to train.
I continue manage our physician database with the assistance of a volunteer. Please ask your physician to join.
In 2018, we represented TMS in the Co-Morbid Coalition that is pivotal in funding research for the co-morbid conditions of EDS, Dysautonomia and MCAS, among other conditions.
We also collaborated with Gene by Gene, a commercial genetics testing company, to bring TPSAB1, the tryptase mutation, to more physicians and patients.
From Courtney Rabb, TMS Board of Directors Fundraising Chair:
It has been a wonderful year for TMS and we are especially 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 were pleased to have a few successful campaigns of both raising awareness and funds during February and Rare Disease Month. During this month we saw the launch of our public news facebook Page to raise more awareness among our communities. This page has been an incredible way to share information to both our patients and those in their own communities who want to learn more about Mast Cell Disease. We also worked on releasing understandable infographics that again could be used to educate the community. Additionally, we had a very successful challenge campaign in August where we raised over $10,000 and during our celebration of our first International Awareness Day. We know in 2019 this day will be even more coordinated and impactful as we will have ample time plan.
We also have had many many members do their own fundraising from different walks- our annual Wyatt Walk- to our now annual Gilley gumbo cook off- and a Karate Studio did a huge fundraiser for TMS. It is amazing to see what our own members have been able to do to raise funds. If anyone would ever like to discuss ideas for fundraisers or ways to help please contact me at anytime at firstname.lastname@example.org
We remain so grateful to each of you- for your dedication and generous contributions. Nothing that we do would be possible without this support and we look forward to all that is to come in 2019.
From Jennifer Lockhart, Advocacy Chair:
TMS has formally launched an Advocacy Committee. We welcome Ariella Cohn and Judi Emmell as committee members along side our TMS BOD. TMS advocacy committee, at the guidance of the BOD, will become a voice for patients and families navigating the difficult often overwhelming complex healthcare system. Initiatives will range from public policy directly impacting patients and caregivers, to participation and partnering with organizations to raise awareness about Mast Cell Disease. Currently we are in discussion with The EVERYLIFE FOUNDATION FOR RARE DISEASES in an effort to have representation on their Community Congress. We hope to have representation on their Regulatory Committee, working primarily on improving the FDA review process; last year the working group developed a Rare Disease Center of Excellence proposal for FDA and their Public Policy committee, focusing on developing a burden study (conducted by an organization like the National Academies of Sciences, Engineering, and Medicine) to examine the economic cost and societal consequence of undiagnosed rare diseases and untreated rare diseases. The Policy group will also look at what’s next for the Orphan Drug Act. We attended as a stake holder on November 27th the Drug Shortage Meeting facilitated by The Duke School of Public Health 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 vulnerable 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 such as the CFC 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 Susan Jennings PhD, Research Chair:
TMS RESEARCH GRANTS
- TMS awarded three pediatric research grants in 2018 thanks to generous donors:
- Anupama Ravi, MD, and co-investigators, Mayo Clinic, Rochester, MN, were awarded a $50,000 grant (mast cell urinary mediators in pediatric mastocytosis and MCAS)
- Olivier Hermine, MD, PhD, and Leila Maouche Chrétien, PhD, Necker Children’s Hospital/Imagine Institute, National Reference Center of Mastocytosis, Paris, France, were awarded a $60,000 grant (evaluation of a cell signaling pathway newly associated with mastocytosis)
- Matthew Giannetti, MD, and Mariana Castells, MD, PhD, Center of Excellence from Mastocytosis, Brigham and Women’s Hospital/Harvard, Boston, MA, were awarded a $60,000 grant (gene expression on skin mast cells of pediatric and adult patients with CM)
- Applications for a joint grant from TMS/AAAAI for $60,000 have been reviewed and the reviewing committee decided to reopen the grant offering for resubmissions and new applications in early 2019
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)
- 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 NIH, which was held in September 2018. To prepare for the presentation, TMS conducted an MCAS Patient Survey in August 2018 and were able to report data from over 1700 respondents.
- Survey results 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
- An abstract on the MCAS Survey results was accepted for a poster presentation at the upcoming 2019 AAAAI Annual Meeting in San Francisco, CA
- 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 is part of a team focusing on fundraising for our paired TMS and AIM conferences, including work earlier this year on an NIH grant application for meeting funding (still awaiting a response from the NIH, but our score was very promising)
- TMS also hosted AIM planning meetings at the 2018 AAAAI Annual Meeting in March 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 this year to update the TMS booth displays for all of the medical conferences we attend
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
- 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 (AIM; see below)
- ASH (American Society of Hematology) Annual Meeting, Dec 2018, San Diego, CA
WRITING AND UPDATING TMS EDUCATIONAL MATERIAL FOR PUBLICATIONS AND WEBSITE
- Performed as needed
From Cheri Smith, Support Group Chair:
The support groups had a great year in attendance and participation at both the Regional and Local support group meetings. All of our local support groups hosted a meeting during 2018 except for Colorado and Tennessee. In 2017 the TMS support groups reached close to 400 participants and in 2018 the support groups have more than doubled this figure by reaching 900 participants. This is a tremendous accomplishment and demonstrates the need within our communities for TMS to continue to provide support groups throughout all of our regions.
Regional meeting attendance: 302
Local support group meeting attendance: 598
Total Regional and support group attendance for 2018: 900
2018 REGIONAL SPEAKERS: Dr. Castells: Pennsylvania Dr. Theo: Florida, New Hampshire, Arizona, Maryland Dr. Akin: Michigan Dr. Miner: Oklahoma
New Groups added for 2018: There were 5 new groups added to the support group team during 2018: Western MA, Pittsburgh PA, Houston TX, Springfield-Branson MO, Scottsdale, AZ
Projected goals for Support groups during 2019
1) Add 9 new support groups: Atlanta GA, Dallas TX, Daytona Beach FL, Greenville SC, Mississippi , Oklahoma City OK, Portland OR, Reno NV, Seattle WA
2) Anticipate most support groups hosting meetings on Saturday, October 19, 2019 in honor of International Mastocytosis and Mast Cell Diseases Day, which is a Sunday in 2019.
3) Have all of our support groups leaders host a minimum of 1 meeting during 2019.
4) Increase TMS membership through support group attendance.
The above information is a great indication of the hard work that our TMS support group leaders provide to our members. It also demonstrates the importance and the need for TMS support group meetings. Finally, the above information shows that the support groups are honoring and participating in the TMS mission by providing tremendous support to all of our members, which was the foundation upon which The Mastocytosis Society first met in 1994, and was incorporated as a non-profit organization in 1995.
I am proud of what the support group team has accomplished during 2018 and I am honored to be the Chairperson for this spectacular team. I look forward to working with all of the TMS leaders during 2019.
From Gail Barbera, TMS Board of Directors Secretary, Education Chair and Volunteer Coordinator:
As Secretary I assist TMS with clerical needs, organize meetings, and update the website and facebook pages as needed. This year TMS was honored to be invited to join the International Mastocytosis and Mast Cell Awareness Day group to represent USA. This new international group and website will facilitate patients from all over the world getting the education they need about mast cell disease in their own language and information about local treatment centers in 22 countries, with more to be added. Our own Jody Bachiman contributed to building the website while I participated on the logo, ribbon design, and with our BOD we organized the very first International Mast Cell Disease Awareness Day in the USA on October 20 where 6 TMS support groups (and many other individuals) took part, along with groups throughout the world. Next year we will have more lead time and it will be an even bigger celebration, send us your ideas and stay tuned!
We are continually looking for volunteers for various jobs in TMS. In 2018 we welcomed about a dozen new volunteers in various capacities – Thank you!! 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, etc. If you have some talents and time to offer please let us know, we can’t do this without you – we LOVE Volunteers, we are ALL Volunteers!
In Education, materials and volunteers were organized to exhibit at 4 medical conferences this 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, the Dysautonomia Conference in June, and a health care fair at Westfield State University MA. Education is also currently supervising Support Groups and together 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. In 2019 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 will also begin 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!
We have formed a brand new Pediatrics Committee. Please welcome :
Susanne Bragg has a Bachelors of Science in Child Development and Family Relations, and a Masters Degree in Counseling. She is recently retired, but worked as a teacher and middle school guidance counselor from 1978 to 1990. She has facilitated support groups for middle school and high school aged students, and served on her district’s crisis team and worked with students when death impacted their campuses at various schools. She volunteered for New Song Center for Grieving Children and facilitated their adult groups for over ten years. She has set up programs as the drug coordinator at her school which included speakers and events. She has coordinated and served as the coordinator for other programs which were educationally based (AVID, home visits, etc).
Wendy Carr Ringer has a Bachelor degree in Special Education, and a Masters in Early Childhood Special Education. She has worked as a Project Coordinator, Family to Family Health Information Center – PACER Center, and at the Institute on Community Integration, YES I CAN Curriculum Trainer and Project Staff – University of Minnesota. She has also been a Special Education Teacher – Minneapolis Public Schools. Her special skills are helping families who have children with special health care needs/disabilities navigate health care and school systems.
Jennifer Mohr has a Bachelor degree with a Dual Major in Linguistics and Communication Disorders, and a Minor in Secondary Education, and a Master of Science in Education. Currently a teacher educator for the City University of New York, Queens College, NYC DOE teacher, extensive experience with language/linguistics/communication and as ESL teacher/educator. She has presented on professional topics at a national level. Her passion is for the arts and how they can transform people and places.
Stacy Sheldon, our former Pediatric Chair, has extensive experience as a substitute teacher in her local elementary school system. She also owns her own Disney travel company. She assisted with the children’s room at the last TMS conference. Stacy will be the Pediatric Liaison with our Support Committee, planning meetups for families with children with mast cell diseases.
~ 2017 ~
The Mastocytosis Society, Inc. continues to serve its members and potential members by upholding our mission of research, education, patient support and advocacy.
TMS launched a brand new website on February 7, 2017 full of completely rewritten and updated material and a new branded image. We also announced that TMS membership is now free for all thanks to our generous donors! All you have to do to join is go to our website and register! Since announcing our free membership, our number of members more than tripled in eight months!
ICD-10 Codes for Mast Cell Activation Syndromes and Mastocytosis: Proposals to create ICD-10 CM codes for Mast Cell Activation Syndromes and update codes for Mastocytosis were developed as collaborative projects between TMS and the AAAAI Mast Cell Disorders Committee. Changes to the ICD-10-CM codes related to MCAS became effective in October 2016. As of October 1, 2017 revised ICD-10-CM codes for mastocytosis have been implemented!
- Mast Cell Disorder Challenges Meetings:
- AAAAI Ancillary Meeting: TMS hosted a Mast Cell Disorder Challenges meeting during the 2017 AAAAI Annual Meeting on Saturday March 4, 2017, bringing together specialist allergists, drug company representatives and members of the TMS Research Committee, moderated by Cem Akin, MD, PhD, and Melody Carter, MD, and focused on formation of a US Network for Mast Cell Disorders. Plans are underway for another Challenges Meeting at the AAAAI meeting in Orlando, FL on March 3-5, 2018.
- American Society of Hematology (ASH) Ancillary Meeting: TMS attended the 2016 ASH Annual Meeting in December and hosted our third ASH ancillary Mast Cell Disorder Challenges meeting, bringing together specialist hematologists and drug company representatives for a discussion focused on formation of a US Network for Mast Cell Disorders, moderated by Jason Gotlib, MD, MS. We are planning our 2018 Challenges meeting in Atlanta, GA, also moderated by Jason Gotlib, MD, MS.
- US Network for Mast Cell Disorders: During the Mast Cell Disorder Challenges meetings hosted by TMS, the need for creating a US Network of Mast Cell Disorder centers and specialists was identified. Under the leadership of Cem Akin, MD, PhD, and Jason Gotlib, MD, MS, as Co-Chairs, activities and planning for the formation of the American Initiative for Mast Cell Diseases (AIM) a network of Mast Cell Disease centers and specialists throughout North, Central and South America is being initiated and holding its inaugural meeting in May 2019. TMS is committed to supporting activities that will lead to the implementation of this network. At the European Competency Network for Mastocytosis Meeting in Paris in October 2017, this committee met and voted on the name of the American Initiative for Mast Cell Diseases, or AIM.
- Grants: The recipient of the 2017 AAAAI/TMS Research Award in Mast Cell Disorders including Mastocytosis and/or Mast Cell Activation Syndrome, Jeremy O’Sullivan from Northwestern University, was announced at the 2017 AAAAI Annual Meeting. TMS contributed $30,000 to this $60,000 award, and Valerie M. Slee, TMS Chair, was invited to participate in the award presentation.
- TMS MCAS Patient Survey: The first set of results from the 2018 TMS MCAS Patient Survey was presented to an NIH meeting of Mast Cell Disease Specialists in September 2018, and also in a poster presentation at the 2019 AAAAI Conference. There are many more interesting results to be mined form this valuable data going forward.
- The TMS Research Committee Chair, Susan V. Jennings, PhD and TMS Chair, Valerie M. Slee, RN, BSN, have been invited to write an article on Patient Perceptions in Mast Cell Disorders for a well-respected journal by the Editor, Mariana Castells, MD, PhD. Additionally, they have been asked to write a book chapter on how patients with mast cell diseases can access support. Susi and Valerie requested permission to expand the chapter to have international information, in order to serve patients globally, and it was approved. To achieve this goal, coauthors from the UK, Brazil, Canada and Australasia were invited to participate.
Patient Support and Advocacy:
- Patient Care Coordination is offered by two registered nurses Monday through Friday. Additional nurses will be recruited and trained by Jan Hempstead RN, TMS Interim Vice Chair. These nurses
- Provide assistance with applying for disability
- Work with insurance companies to get coverage for patients with mast cell disorders
- Work directly with patient’s physicians who have specific questions about care and treatment
- Answer patients’ questions by phone, email and on Facebook
- TMS offers support groups all over the US and endorses liaisons with support groups all over the world
- The next patient conference will be held on the weekend of May 3, 2019 in the Palo Alto/San Jose California area with physician presentations, panel discussions, workshops, support groups, interactive sessions and casual time to mingle with patients, caregivers and physicians.
- Continued presence at medical conferences to educate physicians: AAAAI, AAD, ASH, AAP
- All essential information now offered on an easy to carry flash drive, including article reference list and printed materials like pamphlets and the Special Edition for Healthcare Professionals.
- Educational materials updated regularly with Research Committee members
- All printed material and the Special Edition Chronicles for Healthcare Professionals were completely updated and reformatted in 2017.
- Teamwork has resulted in us getting closer to ketotifen being more readily available in the US
- Worked with RDLA, NORD, Global Genes and the Foundation Alliance on issues critical for patients with mast cell and other rare disorders
- Our Drug Shortage Committee went into action to provide aid to those needing better access to IV Benadryl.
- Our new website was successfully launched on February 7, 2017.
- Our physician Database was launched on October 13 2018! Physicians can self-enroll, edit their own entry or delete their entry at any time. Patients and caregivers may invite their physicians to enroll by sharing this link: www.tmsforacure.org/physician-database. Please share with your physicians and colleagues!
- New media packet is being developed by Ariella Cohen, Media Relations Chair and Courtney Rabb, our Fundraising Chair.
- A $60,000 has been made available for a grant for pediatric mastocytosis and mast cell activation syndrome, thanks primarily to funds raised by the Catalano family and Wyatt Warrior’s walk. A research funding proposal has been issued. We hope to announce a recipient of our pediatric grant by the end of 2017!
- The Kids Corner is a dedicated children’s section of our website, full of games and activities for children.
- The 2019 TMS Conference and the launch of the American Initiative for Mast Cell Diseases (AIM).
- For Research Grants, such as the joint AAAAI grant and the TMS grants we fund alone
- In anticipation of establishing and promoting the future American Initiative for Mast Cell Diseases (AIM)
Valerie M. Slee, Chair
Board of Directors
The Mastocytosis Society, Inc.