2017 TMS Initiatives and Updates

The Mastocytosis Society, Inc. continues to serve its members and potential members by upholding our mission of research, education, patient support and advocacy.

Website:

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 has more than tripled in eight months!

First of all, introducing a few new names you may see at TMS:

Fundraising Chair: Courtney Rabb

Courtney comes to TMS with a background in professional fundraising, and has hit the ground running. She is dedicated to establishing a donor database and fundraising goals, while coordinating efforts with our Media Relations Chair, Ariella Cohen. She has already proven herself to be a wonderful team member!

Media Relations Chair: Ariella Cohen:

Ariella has been part of TMS in the background for a few years, but is coming forward to take a more active role. She is an attorney in the Washington, DC area with a strong history of working in fundraising for non-profits, and non-profit advocacy. We are so fortunate to have her working with us.

Interim Treasurer: Bonnie Sica

Bonnie is a well-organized dynamo who stepped into the Treasurer position while we search for a permanent Treasurer. In her short time with us, she has helped review and procure new insurance coverage, coordinate bill paying with our accounting firm, worked with our state filing expert, Sarah Else of Clearly Compliant, and streamlined many processes for us. Her background in banking and non-profit management has made her an incredible asset. We cannot thank her enough for all she has contributed to TMS.

Medical Conference Project Manager: Jamie Scheff

Jamie is a travel professional with a focus in special needs travel, and has an MBA with a project management certification (PMP). She also has banking experience within the project management framework. She has experience in financial analysis and accounting systems. She is taking over all the management of the Medical Conferences that TMS attends, and has already impressed us with her organizational skills.

Chantelle Cornwell, Medical Conference Materials Handling/Shipping Manager

Chantelle is a young mother and full time student who is eager to take on the role of Materials Handler/Shipping Manager for TMS. She has already procured appropriate storage space that can accommodate the 18 foot truck that picks up and delivers medical conference shipments, and she is ready to set up inventory and start shipping for spring conferences! We are impressed with her enthusiasm and can-do spirit.

Hehershe Busuego, Board Fellow, Fundraising

Danielle Dresner, Board Fellow, Board Infrastructure

Our two Board Fellows are accomplished women who come to us with a wealth of experience in the business and nonprofit world, and are donating their time for one year to assist us in their field of expertise. We appreciate being awarded two board fellows, and look forward to learning from them throughout the year!

In addition, we have two new nurses joining our Patient Care Coordination Team! They will be starting training soon!

Research:

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 a US Network of Mast Cell Disorder centers and specialists are being initiated. TMS is committed to supporting activities that will lead to the formation of such a 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. This American network will ultimately expand to encompass all of North, Central, and South America.
  • 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 Mast Cell Disorder Patient Survey: The second set of results from the TMS Mast Cell Disorder Patient Survey, related to clinical experiences, comorbidities, diets, possible disease in families and opinions, is currently being prepared for publication in a peer-reviewed journal.
  • 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 in 2017. 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.

Education:

  • Continued presence at medical conferences to educate physicians: AAAAI, ACAAI, ASH, AAP
  • We attended an American Academy of Dermatology conference for the first time in March, 2017 and disseminated hundreds of flash drives with informational pamphlets, research articles, consensus criteria, and more.
  • 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
  • The Special Edition for Healthcare Professionals was completely updated and reformatted in line with our new branded image in October, 2017.

Political Advocacy:

  • 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
  • We had teams active in Rare Disease Day activities all over the US.

Communication/Media Relations:

  • Our new website was successfully launched on February 7, 2017.
  • Our physician Database was launched on October 13! 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 new Fundraising Chair.
  • Ariella is also working with international support groups on an International Mast Cell Diseases Day!

Pediatrics:

  • 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.

 Fundraising Goals:

  • The 2019 TMS Conference and possible Scientific Sessions adjacent to it in support of launching the American Initiative for Mast Cell Diseases (AIM).
  • For six small, regional one day conferences for 2018
  • 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)

 

Respectfully submitted,

Valerie M. Slee, Chair

Board of Directors

chairman@tmsforacure.org

Courtney Rabb, Fundraising Chair

fundraising@tmsforacure.org

The Mastocytosis Society, Inc.

www.tmsforacure.org

 

 

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