TMS Quarterly NewsletterFirst Quarter, March 2023The Chair’s CornerA heartfelt greeting to all! There are many changes afoot at TMS and I want to make sure we do our best to keep folks in the loop.First, let me introduce myself. My name is Judi Emmel, the new Board Chair for TMS. I’m still fairly new to the mast cell disease world (actually I hadn’t even heard of a “mast cell” until about five years ago – but that’s a story for another time). Last year I was asked to join the TMS Board where I briefly served as interim Secretary. I was elected Chair in November and started in January. My background is not medical; I spent the past 4 decades in National Security and Intelligence. That said, I do have solid experience working on and growing boards, as well as with change management, with setting up volunteer programs, and with fundraising. I hope I can bring new ideas and position TMS for growth. My involvement with TMS started with my own diagnosis and my quest to find information. Like many of you, I received conflicting guidance from doctors, and eventually realized what they were telling me was well meaning, but often wrong. They were not well versed on mast cell diseases. Google became my best friend, and the web searches for info continued late into the night. Thankfully, those searches continually brought me back to the TMS web page. It was a life-saver. Through this page, the Facebook group and Inspire, I realized that there was hope. I took comfort in e-meeting others with mast cell issues and hearing about their health plans. It broke my heart (and still does) reading what “my people” go through on a daily basis. And, it gave me that push to get involved. I never realized “involved” would mean being the Chair; but I accept this amazing honor with enthusiasm. TMS is a great organization, it changes lives, and it is ready for that next step of growth. We have so many ideas to improve and expand. And, no question, we will need your help! Volunteers make TMS happen!Before I go further, I’d like to acknowledge Valerie Slee, who was the TMS Chairman for over 20 years, and retired in December. As many of you know, Val was awarded the Presidential Volunteer Service Lifetime Achievement Award for her decades of work. She is still involved in developing our Patient Registry.Now it is time to build and grow. We have started by bringing on a new Executive Director, Jessica Fraser. She is high energy and has her own personal connection to mast cell disease. We love her get-it-done attitude! She has already made a significant difference in two short months. So…What am I hoping to achieve for TMS? So much! First, physician education and education overall about mast cell diseases is a top priority. It is critical that medical professionals have a stronger understanding of our issues to better diagnose and help us along our journey. To that end, we are running a second session of “Project ECHO” – a course designed for medical professionals to experience a deep dive from the mast cell disease experts. Ensuring we have funding to keep this program and others afloat is critical. Another area of great importance is our support network. Thanks to our dedicated volunteers, we’ve seen support group meeting attendance grow. We are thrilled that we can offer these groups to connect people and help them learn and share together. Overall, the need to be able to fund bigger research issues and to build the capacity we need to expand, are key. To accomplish all this, we will need to support and grow the TMS staff and increase the number of trained volunteers. The work has already begun. In my first three months as Chair and with our new Executive Director and Board, we have:launched our new webpage that is a “living document” and continually being updated;developed a stronger social media presence – Facebook, Instagram, Linked In, with more in the works (we’ve even launched two press releases – a first!);started the second Project Echo (our thanks to Dr. Marla Barkoff for her leadership on this);awarded a grant in coordination with AAAAI, funding critical research on mast cell diseases;designed a new public presence that we launched at AAAAI in February;attended the AIM meeting and AAAAI Advocacy meeting to stay on the cutting edge and develop key partnerships;engaged with three key pharmaceutical companies pursuing different options for mast cell diseases;conducted a deeper dive into Patient Registries; attended Rare Disease Week on Capitol Hill, lobbying for better funding for research for rare diseases; andre-vamped and launched this newsletter. These are the highlights! It has been an incredible few weeks. There are so many more areas we are looking into, and things we want to share, but this note is getting way too long – apologies! I’m just excited about our way ahead. Thanks Team TMS. Together we can do good things, support each other, and help get the word out about mast cell diseases. My prayers and good wishes to all of you as we travel this crazy journey together. Please know TMS will work tirelessly to help make the journey easier. Be well, JudiPatient Support UpdatesSupport GroupsTMS has several dynamic support groups to choose from. Some examples of our groups include: general adult, positivity & affirmations, work life, women’s, & healthcare professionals. You can register for an upcoming meeting by clicking HERE. You can also visit our other online communities to stay connected. Please note: for the safety of our patients and community, we are holding support group meetings virtually until we can safely return to hosting in-person groups. These meetings are not recorded.This month TMS implemented new rules and regulations for all our groups. These rules are for the improvement of the groups and to ensure support and enjoyment for all. To read the new rules and regulations click HERE.Our April group calendar is open, and registration has begun! We hope to see you soon! Check them out by clicking HERE.Nurses LineTMS nurses are standing by to support you through your medical journey! We can be reached at Nurses@tmsforacure.org.Alexandria’s StoryBecoming Wonder WomanTurning 26 was supposed to be a time for celebration. Who would have thought that a piece of cake I’ve had before would change my life in an instant? I was breaking out in hives. Within minutes, I started to feel tightness in my throat and my tongue swelling. I had never experienced an anaphylactic reaction before. I was scared and didn’t know what to do. My dad acted quickly and administered the EpiPen.Within a few minutes, I was able to breathe. I’ll be forever thankful for the Firemen who stood in my kitchen and argued with the Paramedics to take me to the hospital. I can still hear the Paramedics saying, “She’s fine, she doesn’t need to go.” The Firemen said, “She could have a rebound reaction, she needs to go.” I had no idea what a rebound reaction was. Well, I did an hour later. As I sat in the ER, another anaphylactic reaction started to happen.Little did I know that for the next 2 weeks, anaphylactic reactions would be part of my daily life. The doctors didn’t know what else to do for me and couldn’t figure out why this was happening. Finally, I was strong enough to come home with a medicine regiment that would help me. Or so, I thought…Read the Rest of Alexandria’s StoryResearch Committee UpdateIn February 2023, TMS Research Committee co-chair Susan Jennings, PhD and staff research scientist, Shonna Snyder, PhD attended the 2023 Annual Meeting of the American Academy of Allergy, Asthma, and Immunology (AAAAI) in San Antonio, Texas. This conference is one of the largest meetings for the allergy and immunology fields where cutting-edge research on mast cell diseases (MCDs) and related topics are made public. Attending the AAAAI Annual Meeting is an important way for our research team to learn about medical and scientific updates and to connect with clinician-scientists, investigators, and biopharma representatives in the mast cell disease arena.Because this was our first in-person AAAAI meeting since the start of the COVID-19 pandemic, attending this year’s conference was crucial for reinvigorating collaborations and establishing new connections. Drs. Jennings and Snyder attended sessions and viewed posters related to mast cells and MCDs. TMS was excited to host a hybrid meeting with specialist physicians, clinician-scientists, investigators, and biopharma representatives to begin exploration of a comprehensive patient registry for all types of MCDs. Participants identified a working group who will investigate options and make recommendations regarding the registry. The research team also participated in the AAAAI-hosted patient advocacy breakfast and the MCD Committee meeting.These events provided a great way to introduce our new Executive Director, Jessica Fraser, and Board Chair, Judi Emmel, to the medical and patient advocacy communities. The advances made by our biopharma partners elevated the visibility of MCDs, which increased traffic at our booth this year. Hopefully future efforts will continue to keep MCDs in the spotlight and lead to better therapies or eventually a cure! Project Echo The second Mast Cell Disease TeleECHO Program kicked off March 2nd, 2023. Our cohort of 28 healthcare professionals’ specialties include Internal Medicine, Allergy/Immunology, Pediatrics, Nutrition, Psychology, and Obstetrics/Gynecology.Participants come together once a week from all over the world. This cohort is comprised of healthcare professionals from Australia, Canada, Greece, Hungary, the U.K., and the U.S.The hour-long meeting includes a 20-minute didactic lecture from a subject matter expert (SME) followed by a case presentation from a participant and question & answer. Case presentations are a great way to receive clinical advice. After each session, participants receive access to lecture recordings for their review.If you have any questions about our Project ECHO program, please email: echo@tmsforacure.orgMeet the Team!If you don’t follow us on Facebook, we have been sharing posts about the team over the past several Mondays! Below is a sneak peek at what will be shared on Monday about our Research Scientist, Shonna Snyder.Tell us about yourself? May 22nd, 2023 will be my one year anniversary with TMS. I have enjoyed learning more about MCDs this year and hope to continue helping the organization grow its research division. What do you bring to your role at TMS? Leaving my 20+ year university career was a big change, but that experience has afforded me many skills that I immediately put to use for TMS. I have been using my research and communication skills every day since I onboarded with this awesome organization. Why did you want to be involved in TMS? As a rare cancer survivor (#BladderParaganglioma), I understand the rare patient experience. I wanted to give back and be involved in helping patients navigate an often-misunderstood disease. What do you hope to see TMS accomplish during your tenure? I hope to help the Research Committee publish scientific articles related to the MCD and COVID-19, MCAS, and patient needs. I also hope to help establish a much-needed patient registry that will improve our global research efforts. What do you do for fun? I own a hobby farm in North Carolina where I call home. We grow and sell organic fruits and vegetables and do hayrides for the kids. I enjoy my two German Shorthaired dogs and love anything in the outdoors (when I can handle the heat since my illness). To see all the team’s bios click HERE.Follow us on Facebook to see all our content there, including our upcoming “Meet me Monday” posts about the staff and board.Alexis’ PostLindsay’s PostJessica’s PostHow you can help!Ways to GiveFor ways that you can support TMS financially, visit our Ways to Give page.We couldn’t do this without the generous financial support of our members and sponsoring partner organizations.VolunteeringTMS is seeking more volunteers to serve the community as need for support is growing. If you’re interested in volunteering with TMS, please click HERE! We are currently looking for more volunteers to moderate our private Facebook Support Group. For volunteering questions, please email Lindsay Frazier at Lindsay.Frazier@tmsforacure.org.Stay in TouchStay up to date on all things TMS- follow us on social media!Facebook @tmsforacureLinkedIn @tmsforacureTwitter @mcdiseasesuniteInstagram @mcdiseasesunite
