TMS Webinar & Event Library


2023 Webinars and Events

August 24, 2023: Findings from the PIONEER Trial of Avapritinib

During this one-hour webinar, you will learn more about this ground-breaking study, hear an ISM patient’s perspective, and have some of your questions answered by our guest panelists. For more information about the speakers visit: https://tmsforacure.org/event-august-24th-research-webinar/
To access the presentations and find more resources visit: https://tmsforacure.org/pioneer-trial-webinar-resources/


2021 TMS 24th National Conference Presentations

For background information on mast cells and mast cell diseases please view this Mast Cell Primer Slide presentation.

Cutaneous Mastocytosis in Adults
Indolent Systemic Mastocytosis
Allogeneic Bone Marrow Transplantation in Systemic Mastocytosis
Dr. George Q&A
Myeloproliferative Neoplasm Associated with Systemic Mastocystosis
What is Mast Cell Disease Q&A
Treatment Options for Advanced Systemic Mastocytosis
Update on Effective Treatment for Mastocytosis and MCAS
Perioperative Management of Mast Cell Disorders including Drug Allergies
Guided Meditation with Jan Marie Smith
Updates on the Use of Urinary Markers in Diagnosing MCAS and Mast Cell Disease
Breathing Techniques with Jan Hempstead
Pregnancy in Mast Cell Disease
Updates on Venom Anaphylaxis in Mast Cell Disease
Q&A with Mariana Castells and Lawrence Schwartz
Uses & Limitations of Serum Tryptase Levels in Mast Cell Disorders
Mattie the Mast Cell Drawing Exercise
Hyperadrenergic POTS in Mast Cell Disorders
MCAS Panel Discussion
Bone Marrow Biopsies in Patients Presenting with Mast Cell Activation Symptoms
Guide to Navigating HaT
Endocrinology in Mast Cell Disease
Clair Francomano: Diagnosis of Hypermobile EDS and Hypermobility Spectrum Disorders
Advances in Mast Cell Biology through Single-Cell RNA Sequencing
Mast Cell Activation Disease and Immune Deficiency
Intro to and Updates in Mastocytosis Clinical Trials
Osteopenia and Osteoperosis in Systemic Mastocytosis
Identifying Novel Targets to Inhibit Mast Cells
COVID 19 Infection and Vaccination in Mast Cell Activation Disorders
Dynamic Neural Retraining System: an Effective Tool to Treat Mast Cell Activation
Controlling Gastrointestinal Symptoms in People with Mast Cell Disorders
Mast Cells, Stress, Anxiety, and Options for Treatment
The Power of Patient Advocacy
Anaphylaxis: When and How to Treat
October 20th Slideshow
Mast Cells and Long-COVID
How to Talk to Your Physician

2021 Patient Voice Forums

We are thrilled to announce the relaunch of our of Patient Voice Forums. Monthly, these forums will feature topics that matter most to our members

2021 Patient Voice Forum – Mast Cell Nutrition: Tips and Tricks for a Healthy Holiday Season
Monday, November 15,  2021
Bonnie Nasar, RDN
2021 Patient Voice Forum – Caring for the Caregiver
Friday, September 10,  2021
Amy Ruzicka, PhD 
2021 Patient Voice Forum – Mast Cell Disease Medication Q&A
Friday, August 13, 2021
Matthew Giannetti, MD – Brigham and Women’s Hospital and Harvard Medical School 
2021 Patient Voice Forum – Living Well with Mast Cell Disease: Considerations for emotional support, self-care, and a fulfilling quality of life (Slides)
Wednesday, June 23, 2021
Amy Ruzicka, PhD
2021 Special Videocast – COVID19 Vaccine Study & Mast Cell Disease including Patient Q&A 
June 2021
Thank you to our guest speakers: Dr. Mariana Castells, Director of the Mastocytosis Center; Dr. Matthew Giannetti, Associate Director of the Mastocytosis Center; Dr. Margee Louisias, Director of Diversity & Inclusion, from Brigham & Women’s Hospital and Harvard Medical School in Boston, MA.

To find a study location near you or learn more about eligibility visit
www.covidvaccine-allergy.org

Additional Resources:
COVID-19 Vaccination in Mastocytosis: Recommendations of the European Competence Network on Mastocytosis (ECNM) and American Initiative in Mast Cell Diseases (AIM) (Bonadonna, et al, June 2021) https://www.sciencedirect.com/science/article/pii/S221321982100386X



COVID-19 infection in patients with mast cell disorders including mastocytosis does not impact mast cell activation symptoms (Giannetti, et al, May 2021)
https://pubmed.ncbi.nlm.nih.gov/33631409/
mRNA COVID-19 vaccine is well tolerated in patients with cutaneous and systemic mastocytosis with mast cell activation symptoms and anaphylaxis (Azenha Rama, et al, Jan 2021) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7816615/
2021 Patient Voice Forum – Hereditary alpha Tryptasemia Patient Q&A 
May 2021
Sarah Glover, DO, AGAF University of Mississippi Medical Center
2021 Patient Voice Forum – Dysautonomia & Mast Cell Disease (Slides)
Wednesday, April 21, 2021
Lauren Stiles, JD, President & Co-Founder of Dysautonomia International. Q & A Session at: 1:01:50.
2021 Patient Voice Forum – What You ‘Mast’ Know to Win Your Case (Social Security and Disability)
Wednesday, March 31, 2021
 
We are grateful to our guest speakers Michael Liner and Jen Morgan with Elevate Disability. 
2021 Patient Voice Forum – Pain Management with Mast Cell Diseases 
Wednesday, February 24, 2021
 
We are grateful to our guest speaker Stephanie Carroll, RN. 
2021 Patient Voice Forum – Navigating Nutrition with Mast Cell Diseases 
Wednesday, January 7, 2021
 
We are grateful to our guest speaker Bonnie Nasar, RDN.  Start of presentation at 14:40. Q & A session at 37:52. 

2020 Events

The Mast Cell Disease Society held a free concert at home featuring Ben Rabb, folk singer and songwriter. Watch and join us around the hope and healing power of music.

Year End TMS Living Room Session | Ben Rabb

The Mast Cell Disease Society held a free concert at home featuring Ben Rabb, folk singer and songwriter. Watch and join us around the hope and healing power of music.

TMS Annual General Membership MeetingThe Mast Cell Disease Society held its annual General Membership Meeting on Tuesday, Dec. 1, 2020 to celebrate our work together as 10,000+ members strong to support one another and find a cure for all mast cell diseases.

Meet & Greet with Executive Director

Tuesday, October 27, 2020 We are excited to welcome Lauren Denton as TMS’s executive director and dialogue about how we serve the mast cell disease community.

2020 Patient Voice Forums

We are thrilled to announce the launch of a new series of Patient Voice Forums. TMS wants to ensure our physicians are aware of the needs and concerns of our community. As such, beginning in February we will have a monthly online moderated forum on the various types of Mast Cell Diseases with TMS Advisory Board Physicians.

2020 Patient Voice Forum – Pediatric Mast Cell Diseases 
Wednesday, June 3, 2020
 
We are grateful to our physician panel which included: Dr. Mariana Castells, Dr. Ari Fried and Dr. Anne Maitland
2020 April Patient Voice Forum 
Wednesday, April 28, 2020
 
We are grateful to our physician Dr. Anne Maitland and Dr. Marla Barkoff for their participation.
2020 Patient Voice Forum – Mastocytosis 
Wednesday, March 25, 2020
 
We are grateful to our physician panel which included:  Dr. Cem Akin, Dr. Matthew Giannetti and Dr. Matthew Hamilton.
2020 Patient Voice Forum – Mast Cell Activation Syndrome
Tuesday, February 11, 2020
We are grateful to our physician panel which included: Dr. Matthew Hamilton, Dr. Marianna Castells, Dr. Marla Barkoff, Dr. Charity Fox, and Dr. Theo Theoharides
 
*Please excuse any background clinic sounds you may hear. Some of our physicians have clinics which run into the evening. Thank you for your understanding.

2019 TMS Patient and Caregiver Conference Presentations

GI in Mast Cell Disease
Matthew Hamilton, MD
Mast Cell Activation Syndrome
Anne Maitland, MD, PhD
Venom Anaphylaxis in Mast Cell Disease 
Patrizia Bonadonna, MD
Cem Akin, MD, PhD
Jason Gotlib, MD
Mariana Castells, MD, PhD: Adult Mast Cell Activation Syndrome
Anupama Ravi, MD: Pediatric Mast Cell Activation Syndrome and Brief TMS Grant Update
Biofeedback Basics for Stress and Anxiety

Not all presenters were allowed to be filmed. As such, we are pleased to share a PDF of what they presented at the meeting.

Melody Carter, MD  Pediatric Mastocytosis