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MEETING AGENDA

(Apologies to presenters whose presentations have been split here into multiple parts.  The WIX website constructor limits uploaded files to 25MB, and some of you had some pretty big presentations!)

THURSDAY, APRIL 11, 2019

 

6:00 PM to 7:15 PM:  DINNER

 

7:15 PM to 9:15 PM:  EVENING SESSION: RESEARCH AND DIAGNOSIS

 

7:15 PM to 7:30 PM:  INTRODUCTORY REMARKS/CONFERENCE OVERVIEW

Dr. Lila Rosenthal

7:30 PM to 8:15 PM: ALREADY A YEAR SINCE BOLINAS?  NOTABLE RESEARCH & EDUCATION WORK SINCE FEB 2018

Moderator: Dr. Larry Afrin, MD

 

8:15 PM to 9:15 PM: PEARLS IN THE LABORATORY AND PATHOLOGICAL CONFIRMATION OF MCAS

Dr. Larry Afrin

 

 

 

FRIDAY, APRIL 12, 2019

 

8:15 AM to 9:00 AM:  BREAKFAST

 

9:00 AM to 12:30 PM:  MORNING SESSION: “STEP ONE” IS STEP ONE FOR A GOOD REASON:  IDENTIFYING AND MANAGING TRIGGERS IN MCAS

 

9:00 AM to 10:00 AM: TOXICANT INDUCED LOSS OF TOLERANCE (TILT)

Dr. Claudia Miller: Chemical Intolerance, Gulf War Syndrome, and Similar Conditions.  Exploding Prevalence and Emerging Relationships with MCAS and discussion of the internationally validated 50-item “Quick Environmental Exposure and Sensitivity Inventory” (QEESI) for identifying and addressing chemical, food and drug intolerances. 

 

10:00 AM to 11:00 AM: EXCIPIENTS AND MCAS

Dr. Jill Schofield: The Problem of Excipient Reactivity in MCAS Patients

Additional Resource: Salicylate Sensitivity Resource

11:00 AM to 11:15 AM: THE USE OF COMPOUNDED MEDICATIONS IN MCAS

Dr. Alex Zaphris:  Clinical Pearls on the Use of Compounded Medications for Highly Reactive MCAS Patients (Accompanying Handout)

11:15 AM to 11:30 AM:  BREAK

 

11:30 AM to 12:30 PM: FOOD INTOLERANCES AND MCAS

Dr. Tania Dempsey: Diagnosis and Management of Food Intolerance in MCAS Patients (Part 1 and Part 2)

 

12:30 PM to 1:30 PM:  LUNCH

 

1:30 PM to 3:00 PM: GROUP HIKE/REST/FRESH AIR

 

3:00 PM to 6:30 PM AFTERNOON SESSION: POTPOURRI 

 

3:00 PM to 4:00 PM: MCAS AND THE GI TRACT

Dr. Leonard Weinstock and Dr. Laura Pace (Part 1, Part 2, Part 3): The microbiome, “functional” disorders, and “mastocytic enterocolitis”

Case presentation:  Dr. Ilene Ruhoy: A case of GI and neuropathic symptoms and MCAS

Case presentation:  Dr. Laurie Menk Otto.  A case of collagenous colitis and MCAS

4:00 PM to 5:00 PM:  IF YOU CAN’T CONNECT THE ISSUES, THINK CONNECTIVE TISSUES

Dr. Shanda Dorff and Dr. Alena Guggenheim (“The Bendy Blondes”): Current Thoughts on the Relationships Between Hypermobile Ehlers Danlos Syndrome and MCAS

Case presentation: Drs. Gillian Ehrlich and Ilene Ruhoy: A Case of MCAS and Severe Connective Tissue Fragility

Case presentation: Dr. Shanda Dorff: Case of Lifelong Questions

5:00 PM to 5:15 PM: BREAK

 

5:15 PM to 6:00 PM: HOLISTIC APPROACHES TO MCAS  

Dr. Brian Wise:  Vitamins, Supplements, Herbals and Dietary Approaches to MCAS (Part 1, Part 2)

Case presentation:  Dr. Linda Bluestein: Stabilizing mast cells to relieve dystonia and persistent pain

 

6:00 PM to 7:00 PM:  DINNER

 

7:00 PM to 9:30 PM EVENING SESSION:  WHY DO ALL THESE THINGS GO TOGETHER?

 

7:00 PM to 8:00 PM: DYSAUTONOMIA AND MCAS

Dr. Andrew Maxwell and Dr. Laura Pace: The Blind Doctors’ Attempts at Assembling the Elephant. A.K.A Current Thoughts on Mechanisms of the Interactions Between MCAS and Dysautonomia and other Co-morbidities: Diagnostic and Therapeutic Implications.

 

8:00 PM to 8:45 PM:  GENETICS

Dr. Richard G. Boles:  Genetic Testing in chronic "functional" conditions, including MCAS, dysautonomia, GI dysmotility, fatigue, and pain: What to Order? What Difference Might It Make? (Part 1, Part 2, Part 3, Part 4, Part 5, Part 6)

 

8:45 PM to 9:30 PM:  SIBO DEBATE

TO TEST AND TREAT, OR NOT TO TEST AND TREAT (i.e., Treat the Underlying Cause First)?

•PRO: Dr. Leonard Weinstock

•CON: Dr. Laura Pace (Part 1, Part 2, Part 3, Part 4)

 

 

SATURDAY, APRIL 13, 2019

 

8:00 AM to 8:45 AM: BREAKFAST

 

8:45 AM to 12:45 PM MORNING SESSION: IF THIS WERE EASY, WE’D ALREADY KNOW THE ANSWERS--SELECTED CHALLENGES IN MCAS DIAGNOSIS AND TREATMENT

 

8:45 AM to 9:30 AM: DIAGNOSIS DEBATE--ECONOMY VS. FIRST CLASS IN MCAS DIAGNOSIS AND TREATMENT:  PEARLS LEARNED WHEN YOUR ONLY TEACHERS ARE YOUR PATIENTS

FIRST CLASS:  Confirm the diagnosis with at least two tests:  Dr. Larry Afrin

ECONOMY:  Happy with only one test or treat empirically when it makes sense:  Dr. Lila Rosenthal

 

9:30 AM to 10:30 AM: TREATMENT PEARLS IN MCAS

Dr. Larry Afrin

              

10:30 AM to 10:45 AM:  BREAK

 

10:45 AM to 12:00 PM  GYNECOLOGIC, OBSTETRIC AND HORMONAL ISSUES IN WOMEN WITH MCAS (Dr. Shanda Dorff)

Dr. Lila Rosenthal: Hyperestrogenism and MCAS: Should we be hypervigilant about estrogen excess in MCAS?

Dr. Tania Dempsey: Polycystic Ovarian Syndrome (PCOS) and MCAS (Part 1, Part 2)

Case Presentations: Dr. Shanda Dorff: Gyn, OB, and Hormonal MCAS Presentations

Case Presentation: Dr. Lenny Weinstock:  MCAS patient with stage I cervical cancer

 

12:00 PM to 12:45 PM: SEVERE, COMPLEX AND LIFE-THREATENING MANIFESTATIONS OF MCAS

Dr. Larry Afrin Moderator.  

Attendees present case studies of more complex patients that have been successfully managed (what worked, what didn’t, how long was each med tried, etc.)

Case presentations:

Dr. Dave Schlosser and Dr. Alena Guggenheim:  A patient who is like Superman but everything except a fecal transplant is like kryptonite.

Dr. Skip Rosenbloom:  59-year-old woman with multiple serious complications of MCAS

 

12:45 PM to 1:30 PM:  LUNCH

1:30 PM to 3:00 PM: GROUP HIKE/REST/FRESH AIR

 

3:00-6:15 PM AFTERNOON SESSION: ELEPHANTS IN THE ROOM

3:00 PM to 3:45 PM:  NEUROPSYCHIATRY AND MCAS

Dr. Tania Dempsey

Case presentation:  Dr. Janet Settle

 

3:45 PM to 4:30 PM:  MOLD AS A DRIVER OF MCAS  

Dr. Sonia Rapaport

Case presentation:  Dr. Dwight McKee: Mold as a Driver in MCAS

 

4:30 PM to 4:45 PM:  BREAK

 

4:45 PM to 5:30 PM:  MICROBIAL BASIS FOR MCAS

Dr. David Kaufman: Diagnosis of Infection-Initiated vs. Infection-Escalated MCAS

 

5:30 PM to 6:15 PM:  MCAS IN EARLY LIFE

Drs. Jill Cuni and Andy Maxwell:  Where it all begins--Pediatric presentations of MCAS

 

6:15 PM to 8:00 PM:  OFF-SITE DINNER (WALKING DISTANCE OF HOTEL)

 

8:00 PM to 9:45 PM EVENING SESSION: WHAT HAPPENS WHEN WE ASSUME IT’S MCAS—OTHER IDEAS TO PONDER

8:00 PM to 9:00 PM:  WHAT ELSE MIGHT IT BE?  MCAS-MIMICS

Case Presentation:  Dr. Jill Schofield:  A case of MCAS and POTS secondary to an underlying auto-inflammatory syndrome 

Dr. Carla Guggenheim: Important Differential Diagnostic Considerations the MCAS Practitioner Can't Afford to Forget

Dr. Andy Maxwell:  The use of a custom Gene Dx panel in complex dysautonomia patients

 

9:00 PM to 9:45 PM:  MTHFR VARIANT DEBATE

THEY MATTER:  Dr. Tania Dempsey

THEY DON’T MATTER: Dr. Lawrence Afrin

 

 

 

SUNDAY, APRIL 14, 2019

 

8:00 AM to 8:45 AM:  BREAKFAST

 

8:45 AM to 11:00 AM CLOSING SESSION:  ENOUGH WITH THE SCIENCE AND THE FUTURE—HOW CAN WE MAKE THIS WORK TODAY?

8:45 AM to 9:15 AM:BURNOUT VS. MORAL INJURY ​

Dr. Lila Rosenthal and others

9:15 AM to 10:45 AM:  PRACTICE MANAGEMENT CONSIDERATIONS

Panel Discussion: Practicalities of Developing and Managing an MCAS-Heavy Practice

Including discussion of using group medical visits, collaborating with insurers, educating colleagues to create care teams, streamlining processes (resourcing our patients), developing care guidelines

Dr. Laurie Radovsky and Dr. Jennifer Curtin (Part 1, Part 2)

10:45 AM to 11:00 AM: CLOSING REMARKS 

Dr. Lila Rosenthal, Dr. Jill Schofield, Dr. Tania Dempsey, Dr. Lawrence Afrin

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