Summer 2017 Chronicles, Letter and Updates from the Chair

Jul 01, 2017

Summer Greetings!

Here within TMS, there is so much going on that I hardly know where to start. The new website has been launched and running now for over four months, and we are delighted with the results thanks to the design team of Russell Hirshon and Shannon Flynn at Ministers of Design. We have abolished membership fees, thanks to donations from generous donors, and have more than doubled the number of TMS members! Anyone can join TMS by simply going to our website, www.tmsforacure.org and clicking on the Membership button on the top right of the screen. We have attracted many more families affected by mast cell disorders, as well as physicians caring for them. In short, we have reached our short term goals.

However, this is just the beginning. This website is our tool for reaching into the future and helping TMS to accomplish great feats. The Mastocytosis Chronicles Newsletter is going online in a totally new electronic format as TMS goes green!  In our interactions with other non-profits, we became aware that the concept of a printed newsletter sent out by mail is outdated and not good for the environment. In addition, it does nothing to bring readers to all of the other exciting news on the new TMS website. We have been reading and learning about how an electronic newsletter should work, and we are ready to launch it for TMS! The newsletter will go out to all registered TMS members only, via our Constant Contact email blast network, and will contain information to brand new articles and posts that have been placed on the website specifically for this addition to the Chronicles. Please note that an electronic newsletter differs from a traditional newsletter in that it is not a downloadable document that can be printed, but rather, provides direct links to new and exciting material on our website. We look forward to seeing if this works as well for TMS as it has for other non-profits.

This summer we are also launching the first TMS Physician Database! Physicians in any specialty area or even primary care physicians who take care of patients with any form of mast cell disorder are welcome to send in a registration form. TMS members can take an active role in making this Database a success by inviting their own physicians to join by sending the physician’s name and contact information, including email address, to our Physician Registry Coordinator, Jan Hempstead. In addition, any physician can submit a form to self-enroll. Once the enrollment form is received by Jan, she will contact the physician by phone and interview him or her to discuss practice parameters and preferences. The physician can edit his or her own entry at any time, or even remove the entry from the database if desired. Each physician will determine which information can be shared with patients and families, and there is also an opportunity for him/her to share private information with TMS for emergencies. We see this registry as starting out with a few physicians and rapidly growing to contain hundreds, and eventually thousands of entries. Look for further instructions on the day we launch the Physician Registry! It will help serve as the foundation framework for the American Network/Alliance for Mast Cell Disorders.

We are working closely with a committee chaired by Jason Gotlib, MD, MS and Cem Akin, MD, PhD to establish the American Network/Alliance for Mast Cell Disorders. The TMS members of the Committee are Susan Jennings, PhD, TMS Research Chair and me. Members of the AAAAI Mast Cell Disorders Committee and hematologists from the mast cell disease arena have all agreed to collaborate and work towards the common goal of organizing a launch meeting of scientific presentations in spring of 2019 adjacent to the TMS patient meeting. (Please note: while the date is not yet confirmed, it has recently been determined that September 2018 is not viable due to physician commitments and lack of hotel availability.) Dr. Gotlib has offered to organize the physician portion, and TMS will handle the patient portion. Planning meetings have already begun. We look forward to working with local support group leaders for organizing the patient conference.

What is the purpose of such a network? Europe already has a similar one, called the ECNM, European Competence Network for Mastocytosis. As we plan the American Network/Alliance on Mast Cell Disorders, we are fortunate to have the support of our European colleagues from the ECNM. This is a network of comprehensive centers of excellence, which can handle all aspects of diagnosis and treatment for mastocytosis, and smaller (in scope) reference center, which may specialize in one specific area of diagnosis and/or treatment across Europe.  The centers collaborate on research and other patient centered initiatives. The American Network/Alliance would encompass all mast cell disorders. In preparation for this, Catherine Weiler, MD, PhD, Chair of the AAAAI Mast Cell Disorders Committee, has called for a policy statement to be written on mast cell activation syndrome to more clearly define the parameters of that disorder. A committee is currently working on that policy statement, and I am a member of the committee.

Having such a network will mean that in the next five to ten years, access to care for patients with mast cell disorders will improve dramatically. Hospitals and medical centers within the network may collaborate on patient studies, retrospective analysis of blood and tissue samples stored, development of research endpoints, and share newly successful diagnostic methods and treatments. Awareness of mast cell disorders and how to treat them will increase dramatically. Physicians trained in these centers will go out and work in other facilities, increasing access to care for our patient population.

One aspect of this network that we still need to fundraise for is physician education. There are very few physicians who wish to specialize in mast cell disorders. Doing so requires additional fellowship training, and physicians at that stage in their career are already strapped financially and tired of being a physician-in-training. We need to raise significant funds to make it worth their while to invest in another fellowship rotation specializing in mast cell disorders. Some physicians have suggested it could be a traveling fellowship in order to be exposed to different types of mast cell patients at different centers. We would need to cover not only the cost of fellowship training plus insurances, etc., but we would have to make it worth their while to want to do this. If we could train two physicians per year, in fifteen years, we would have thirty new mast cell specialists. Think about that and what it would mean for all of us. We are talking about raising significant funds on an ongoing basis, but the investment for the future of TMS patients would be incredible.

The Research Committee under the direction of Susi Jennings is busy editing articles submitted by physicians for inclusion on our website. In addition, Susi and I will begin working with the committee assembled to revise the ICD-10 CM codes for mastocytosis, under the direction of Arnold Kirshenbaum, MD. We submitted revised codes for mastocytosis in the summer of 2014, according to the categories established by the WHO criteria, as we were instructed to do by the CDC/NCHS. However, we received feedback that we had too many codes for such a rare disorder! Since then, changes to the cutaneous categories have been proposed by the working group, and will need to be incorporated. We will have to reconvene and see if any mastocytosis codes are scheduled to be implemented in 2017; we will then need to include any new proposed changes, such as those for cutaneous mastocytosis and resubmit the proposal. The Research Committee is also busy planning the two Challenges Meetings, one of which takes place in December 2017 at the American Society of Hematology meeting, and the other at the American Academy of Allergy, Asthma and Immunology meeting in March 2018.

We will be looking for new medical conference volunteers to join our team! TMS will train you and pay for your expenses according to established guidelines, and in return you will learn how to educate physicians at medical conferences. Conferences vary from 3-5 days in length. Please let us know if you are interested by emailing us at tmsbod@tmsforacure.org and filling out a Volunteer form on the TMS website. We will send you a list of requirements for medical conference volunteers. In addition, there are other volunteer opportunities available at TMS. Please look at the article on Volunteers Needed for more information. We look forward to working with you!

We have other news at TMS also! Gail Barbera, TMS Secretary, has also taken over as Education Chair and Website Committee Chair. Gail has been training long hours along with Susi Jennings from Research to learn how to add new information to the website for TMS. Jan Hempstead was appointed to the Board of Directors as she continues in her role as Patient Care Coordinator. Jan, as I said previously, will also be the Physician Registry Coordinator. Jan also plays a very active role monitoring the Facebook page.

Mishele Cunningham has stepped down from her roles as Medical Conference Chair and Education Chair. Mishele has served TMS for many years with dedication and enthusiasm. She has helped many patients and families, and has helped to carry TMS into the future. She did a wonderful job organizing the four medical conferences each year, including shipping the booth materials and arranging for volunteers. Her husband Casey also stepped down as Technology Chair. Casey was very helpful in setting up the IT and audiovisual technology for TMS meetings. We wish Mishele, Casey and their family all the best in the future!

Support groups are exploding in number and size under the direction of Rita Barlow and Cherie Smith. Check out our Support Group pages on the website. Scheduled support group meetings will have a special symbol by them. Attending a support group meeting can leave you with a “high” that lasts for weeks. It is amazing to experience being in a room full of people who face the same daily challenges. Find a support group near you or volunteer to start one! Rita and Cherie have also taken over many of the duties previously handled by the Membership Committee, including seeking Volunteers at Support Group meetings and instructing them on how to submit a Volunteer Application, found on our website. Gail Barbera will be handling online Volunteer Applications.

Susi Jennings, Gail Barbera and I have been working with an outside patient outcomes research firm collaborating with a mast cell disorder drug development company to help them understand what living with mastocytosis is like. Opportunities to participate in research such as this help all of us affected by mast cell disorders. For those of you who are on Facebook, you can read more about it on our TMS Facebook page, https://www.facebook.com/groups/155824303735/. Opportunities exist for patients with Indolent Systemic Mastocytosis to be interviewed online via Skype in early July. Proof of diagnosis according to WHO criteria is required. An announcement about this was also sent out to all TMS members via email blast.

The TMS Board did not plan a TMS conference for 2017 so that we could take this year to organize the infrastructure of TMS. We are working hard on this. Gail is working with Rita and Cherie to create manuals for both new Support Group Leaders and attendees. We now have a written policy for Volunteers, as well as a policy for Professional Conduct for the Board of Directors. We will be undertaking a bylaw/articles of incorporation/conflict of interest policy review this summer. Each Chair is working to more clearly define the parameters of his or her position so it can be clearly documented. We have applied for interns to work with the Board on Board Infrastructure and Fundraising from Net Impact Boston, a group that provides free help to nonprofits. We have just been informed that we have been awarded two interns, who will volunteer with us for one year starting in September 2017, one for fundraising, and one for infrastructure. We will begin interviewing the applicants soon. We are enormously grateful for this amazing opportunity to work with these very well qualified and experienced individuals who have advanced degrees in management or non-profit leadership as well as years of experience.  We also plan to document all general policies that we practice, most of which are common sense, but which we do not have written down anywhere. By the end of 2018, TMS should be thoroughly well documented, and well on our way to a fundraising path of excellence!

Stephen Rey, TMS Treasurer, and Patricia Beggiato, Fundraising and Patient Advocacy Chair, have been working hard to find the best ways to coordinate communication with patients through Constant Contact, an email blast system, and other forums. Stacy Sheldon, our Pediatric Chair, who is also a travel agent, will be handling booking flights for volunteers and physicians traveling to medical conferences going forward.

As always, your support means a lot to us! Donations can be made directly through our website, or through a check mailed directly to TMS, P.O. Box 416, sterling, MA 01564, and make a huge difference when it comes to making it possible to achieve our goals. Recurring donations are really valuable in helping us plan for the future.

Have a safe and trigger free summer!

Respectfully Submitted,

Valerie M. Slee, TMS Chair