Archives

2019 RESEARCH AWARD: TMS Partners with the AAAAI to Fund MCAS Research

Jul 18, 2019

In 2018, The Mastocytosis Society, Inc. (TMS) conducted a survey on Mast Cell Activation Syndrome (MCAS) with over 1700 respondents, which included participants with Mastocytosis or Hereditary Alpha-Tryptasemia (HAT) who may also have MCAS. Nearly 50% of survey respondents also reported physician-diagnosed Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS). Studies into the relationship between MCAS and dysautonomia […]

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Mast Cell Activation Syndrome Patient Survey: UPDATE

Jul 16, 2019

Mast Cell Activation Syndrome (MCAS) Patient Survey This survey was open from August 17 – 25, 2018. (THIS SURVEY IS CLOSED) UPDATE-7/16/19 Our MCAS Survey team was excited to have a new poster on the survey data accepted for presentation during the American Initiative in Mast Cell Diseases (AIM) Inaugural Investigator Meeting in May 2019 […]

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Pharmaceutical Company Patient Advisory Board: Advanced Systemic Mastocytosis

Jul 16, 2019

We at TMS strive to keep patients and families informed of opportunities that may help lead to improvements of quality of life for individuals affected by mast cell disease. With that in mind, we are sometimes able to offer opportunities to share your experiences related to your or a loved one’s disease. Immediately prior to […]

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Mast Cell Disorder Challenges Meetings and American Initiative in Mast Cell Diseases (AIM)

May 21, 2019

UPDATE-May 2019: Partnered with our TMS Patient/Caregiver Conference (May 1-3, 2019), TMS and the American Initiative in Mast Cell Diseases (AIM) Steering Committee worked together to host the Inaugural AIM Physician/Investigator Conference (May 4-5, 2019).  Both conferences were held in the San Francisco Bay Area. The intention of AIM is to develop a pan-American mast […]

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TMS Research Committee Activities

Mar 21, 2019

Below is a description of updates and progress on projects related to The Mastocytosis Society (TMS) Research Committee. Major activities and initiatives are noted, but for a full list of activities in which the committee is involved, please see our Join the Research Committee section of this website. Where applicable, click on titles for more information. […]

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Cheyanne Perry

Feb 07, 2019

A woman stood amongst the rubble, solemnly watching as the emergency crew prepared her husband for transport. An officer contorted his face with a hardened expression, delivering the unfortunate news. It was assumed he fell asleep behind the wheel. The predicted outcome was grim. Despite numerous miscarriages, the young newlyweds were unknowingly parents the day […]

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Joseph Lentz

Jan 06, 2019

Joseph has been his parents hero from the very beginning. He was diagnosed with Diffuse Cutaneous Mastocytosis by 6 months old at the University of Minnesota Masonic Hospital. Now at the age of 6, he is at risk for extreme anaphylaxis at any time. We are also being challenged with GI and fatigue problems. JoJo […]

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Deciphera Pharmaceuticals Presents: Living with Systemic Mastocytosis (SM) WebEx

Oct 03, 2018

VIDEO NOW AVAILABLE ONLINE! On Tuesday, October 9, 2018, Deciphera Pharmaceuticals hosted a webinar for the Systemic Mastocytosis (SM) community about Living with Systemic Mastocytosis, and Deciphera Pharmaceuticals’ ongoing clinical trial of DCC-2618, an investigational drug being testing in people with smoldering and advanced forms of Systemic Mastocytosis. Oliver Rosen, MD, former Chief Medical Officer at […]

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Epi Pen Shortage

Sep 14, 2018

There is an ongoing shortage of epinephrine auto-injectors causing a crisis for mast cell disease patients attempting to fill their prescriptions. Our F.A.R.E. (Food Allergy Research & Education) colleagues have recommended the following steps: Visit http://healthmart.com/ to find an independent pharmacy. Ask your doctor for another brand and get trained on how to use it. […]

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Informational Webcast on Avapritinib Clinical Trial Program in Systemic Mastocytosis (SM)

Sep 05, 2018

 Informational Webcast on Avapritinib Clinical Trial Program in Systemic Mastocytosis (SM) On Tuesday, September 18, The Mastocytosis Society and Blueprint Medicines hosted a webinar for the SM community about avapritinib (also known as BLU-285), an investigational medicine for people with systemic mastocytosis (SM). Dr. Andy Boral, Chief Medical Officer at Blueprint Medicines, shared an update on […]

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