Mast Cell Activation

This article was first published by The Mastocytosis Society in their newsletter, “The Mastocytosis Chronicles” in the Summer of 2014. A special thank you to Dr. Satish Raj and the Medical Review Committee of The Mastocytosis Society for their editorial help. If you suspect you have a mast cell activation disorder please visit The Mastocytosis Society website at for more information.

A large number of mast cell activation disorder patients carry a concurrent diagnosis of Dysautonomia, a collection of conditions associated with dysfunction of the Autonomic Nervous System (ANS).

During a physician-patient small group discussion at last year’s Mastocytosis Society Conference, the question was raised, “How many of you have been diagnosed with POTS?” (Postural OrthostaticTachycardia Syndrome). Surprisingly, approximately half of the group, approximately 20 out of 40 patients raised their hands. POTS is a chronic form of dysautonomia characterized by tachycardia in response to orthostatic stress such as going from a sitting position to standing and may involved multiple organ systems. The symptoms can range in severity from mild to disabling. Interestingly, the co-existing conditions of dysautonomia did not stop with POTS. Patient participants reported diagnoses with other forms of dysautonomia including Neurally Mediated Syncope (NMS, also known as Neurocardiogenic Syncope or Vasovagal Syncope), and Orthostatic Hypotension. Interestingly, the coexisting mast cell disorders included patients with disorders along the mast cell activation disorder spectrum (MCAD) including IgE-mediated Anaphylaxis, Cutaneous Mastocytosis, Systemic Mastocytosis, and Mast Cell Activation Syndrome (MCAS). Clearly, there appears to be a connection between dysautonomia and mast cell activation (MCA), but what? The presence of gastrointestinal (GI) symptoms may be prominent in both of these disorders but in general, the involvement of mast cell mediator activity and its association with ANS dysfunction is a topic that has been given little attention. Further study in this area may provide clues about the pathophysiology of both dysautonomia and MCADs.

It is known that mast cells interact closely with nerves. Mast cells have been observed degranulating adjacent to nerve synapses and increased numbers of activated mast cells have been documented in the mucosal tissues in “functional” gastrointestinal (GI) disorders that often coexist with dysautonomia. It therefore makes sense that abnormal mast cell mediator release may be a driving force behind nervous system disorders that involve the ANS and that may lead to GI symptoms. The ANS is made up of three parts: the sympathetic nervous system, the parasympathetic nervous system and the enteric nervous system (ENS). Much of the current study of dysautonomia focuses on the roles of the sympathetic and parasympathetic nervous systems, however there has been little emphasis on the ENS. The ENS is comprised of a fabric-like system of neurons that are located in the smooth muscle linings of the intestines (see figure below) and plays an important role in many GI functions. It stands to reason that dysautonomia affecting the ENS leads to GI symptoms.

This cutout view of the small intestine illustrates the location of the nerves that make up the ENS.
Basic structure of the alimentary canal, including its four basic layers. Digital illustration. © 2012 Pearson Education, Inc.

Not enough is known about MCA. However, it may be one of the more important medical findings of our time. There are many theories about the basic mechanisms of MCA that may contribute to GI symptoms including diarrhea and abdominal pain. For example, mast cells may activate near the nerve synapses in the smooth muscle walls surrounding the lining layers of the GI tract possibly changing the “leakiness” of the gut. At this time there is not enough clinical evidence to understand the full relationship between GI problems and MCA. We know that mast cells have the capacity to release chemical inflammatory mediators including; histamine, leukotrienes, prostaglandins, proteases and cytokines. In the GI tract, it is possible that these mediators may be affecting smooth muscle contraction (to increase or slow the propulsion of food through the GI tract) and may increase leakiness and mucus secretion (to cause more watery-type diarrhea). But understanding how MCA works in patients to cause symptoms requires further research.

An improved understanding of MCA is critical because it appears to be more common than initially thought. MCA is now implicated in many chronic medical conditions such as Irritable Bowel Syndrome (IBS), Fibromyalgia and Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). Overlapping symptoms in these disorders may be attributable to MCA because of the diverse array of mast cell mediators that may be involved and that act on multiple organ systems. Although it will be hard to determine how many patients suffer from disorders due to abnormal MCA, it is likely that all physicians see at least a handful of these patients in their practices. MCA may be playing a role in as much as 15-20% of the patient population who have chronic, multi-system symptoms. This is hypothesized based on what we know about mast cell biology in relation to inflammatory disorders.

Although we would like to think that physicians at the local level increasingly recognize MCAD, the reality is that many do not consider these disorders when confronted with a patient presenting with multiple seemingly unrelated complaints. Like dysautonomia patients, mast cell patients present heterogeneously with complaints that may differ from patient to patient. This makes it difficult for doctors to recognize and diagnose such conditions. For this reason, it is important that patients be proactive and educate physicians about their suspected condition(s) and even help them understand which tests are needed to make a diagnosis. A wealth of information is available on The Mastocytosis Society website ( In the case of MCAS, much of the diagnosis still relies on the physician’s ability to elicit the key signs and symptoms of MCA and to ensure that there is no other condition that better explains the patient’s symptom profile. The physician must also determine whether a patient has adequately responded to anti-mast cell mediator medications, which support the mast cell activation diagnosis. Lab tests are used to confirm the diagnosis. Since some lab tests are more or less specific for detecting abnormal mast cell activation and many variables have the potential to interfere with consistent findings more research is needed to improve and standardize laboratory tests. Most tests are sent out to various labs in the country such as Mayo Clinic so any physician can order them. Common screening tests used at Brigham and Women’s Hospital for MCAS are a serum tryptase, a 24 hour urine for N-methyl histamine, prostaglandin D2 or its metabolite 11-beta prostaglandin-F2α. Although urine samples must be kept refrigerated until submitted to the laboratory (unless your lab provides collection bottles with chemicals added to stabilize the sample without refrigeration) these metabolites are thought to be relatively stable. These tests are ideally performed when the patient is at their “baseline” and then repeated during a flare of symptoms or during the acute onset of symptoms. If a clonal mast cell disorder such as systemic mastocytosis is suspected because of an elevated tryptase, characteristic urticaria pigmentosa rash, a history of unexplained anaphylaxis, or other clinical features, then a KIT D816V mutation can be screened for with a blood test. It is recommended that a specialist with knowledge of these disorders sees the patient with a strongly suspected or confirmed MCAD. Consultation with an experienced specialist will help confirm the diagnosis, characterize it among the spectrum of mast cell disorders and determine whether a patient will need additional testing such as a bone marrow examination, colonoscopy with biopsies, or a bone DEXA scan.

The three most common GI symptoms that accompany MCAD and dysautonomia are:

  1. Abdominal Pain (Some component of this is seen in nearly all MCAD patients. Note: this is also common in many primary GI disorders such as IBS).
  2. Diarrhea
  3. Bloating and gas

Additional GI complaints include: constipation, gastroparesis (slow emptying of the stomach), nausea, vomiting, and gastroesophageal reflux disease (aka “GERD”) that may result in heartburn and occasional swallowing difficulties.

When patients are evaluated for the above GI symptoms, health care providers often consider and rule out other inflammatory conditions such as celiac disease, inflammatory bowel disease (ulcerative colitis, Crohn’s disease, microscopic colitis), chronic infections (such as Giardia), malignancy (colon cancer), and functional GI disorders such as IBS where there is no obvious abnormality detected on testing. It is important to note that many of these disorders may present with similar symptoms so specific testing may be required to differentiate them.

A key clue that a patient may have a mast cell disorder is the presence of complaints and ongoing symptoms in many organ systems (GI tract, skin, lungs) of varying severity and intensity.

These other symptoms outside of the GI tract may include fatigue, flushing, dermatographism, memory/concentration difficulties, headaches, itching and respiratory problems. Symptoms tend to wax and wane and may be triggered by various environmental factors such as certain foods, temperature changes, bites/stings, stress and strong inhaled scents. When present with dysautonomia it is common to have orthostatic issues (symptoms such as light-headedness and palpitations upon standing), peripheral neuropathies (numbness and tingling in the feet and/or hands), GI issues that sometimes include the upper GI tract including gastroparesis, reflux, and nausea. These complaints associated with MCA appear to be fairly prevalent in the dysautonomia population and especially in patients with POTS.

Since many Gastroenterologists would likely not consider dysautonomia and/or MCAD when assessing a patient’s GI symptoms, two-way communication between patient and physician is often a crucial element in the diagnostic process. Ultimately, the process of diagnosing MCAD may be lengthy and time consuming. It is important that both patient and physician are diligent and that patients strive towards the detection of objective findings that can validate the suspected condition. Although this diagnostic process may be frustrating to the patient, having a high suspicion for a mast cell disorder is a valuable first step.


Rule Out Dysautonomia
Once a mast cell disorder has been identified, it may be helpful to evaluate for the co-existence of dysautonomia due to the observed possible association of these disorders. This can be done initially in the clinic by assessing the orthostatic vital signs of the patient. If abnormal vital signs (such as a 30 beats per minute or more increase in heart rate or a drop in blood pressure of 20/10 mmHG (millimeters of mercury) after three to five minutes of standing) are identified in response to orthostatic stress, a full autonomic workup by a knowledgeable dysautonomia specialist may be warranted. A number of reputable autonomic specialists can be found on the or websites. It is important to recognize the presence of dysfunction of the ANS in order to provide a complete set of treatment options for the patient.

Find an Effective Local Doctor
Perhaps in no other medical condition is it more important to have good two-way communication between the patient and physician than in the case of MCAD. This is because the medical community is still learning about the pathophysiology of MCA and associated disorders. Further, the dissemination of clinical research findings often do not make their way down the chain quickly to the local treating physician. Finding an effective local doctor means finding a physician who is willing to work with an out of town specialist, refer to appropriate specialists and learn about MCAD and/or dysautonomia themselves. Effective continuity and communication between the local physician, specialist, and patient is necessary for optimal clinical outcomes.


Patient education about MCA disorders and/or dysautonomia is helpful in both developing knowledge about these conditions so as to arrive at the appropriate diagnosis and to seek the best treatments. Further, the patient or family caregiver is often the best advocate in dealing with various providers, hospitals and emergency care centers.

Below is a list of learning points for both patient education and advocacy:

  1. Mast cells are protective in nature. They act much like soldiers with ammunition made of chemical mediators (histamines, prostaglandins, leukotrienes, and other cytokines) that when working properly help to fight off various invaders of the body such as bacteria, viruses, parasites, toxins, etc. However, there are several disorders where these mast cells activate abnormally leading to the inappropriate release of chemical mediators that can play havoc in many and/or all organ systems.

  2. Mast cells are a key player in the immune system. In MCAD, the mast cell abnormally activates releasing the chemical components, which have a direct effect on symptoms within the body including vasodilation (effects on blood vessels that may result in symptoms such as flushing or light-headedness with standing) and inflammation. Since mast cells inappropriately activate in close proximity to the nerves, which are located in multiple organ systems throughout the body, it is not a surprise that patients may have multi-organ symptoms, neuropathies, potential autonomic dysfunction and other nerve symptoms throughout the body. It is important to note that there is not sufficient evidence that MCADs are auto-immune in nature. In autoimmune disease the immune system attacks itself in one or more localized region(s) of the body. In such conditions mast cells play more of an accessory role rather than a direct role in contributing to localized inflammation. Instead, in MCAD, it may be helpful to think of the mast cells as being abnormally overactive or hyper-immune.

  3. Mast Cell Activation Disorders Can Be Managed. Although there is no known cure for MCAD, most patients with indolent (benign) systemic mastocytosis can expect a near normal life expectancy if they are diagnosed and managed correctly, avoid triggers, and are always cognizant that they are at increased risk of anaphylaxis. Nonetheless, MCAD can cause chronic and acute symptoms that may be chronically disabling in nature (poor quality of life, loss of time from work, hospitalizations, unnecessary medical procedures and interventions). The ideal treatment addresses the “whole patient” and not just one organ system at a time (See below for recommended pharmacological treatments). The overall management should include pharmacological and non-pharmacological treatments.

  4. Knowledgeable Mast Cell Activation Patients Are Advocates. Since MCAD patients present heterogeneously, it is crucial that the patient and/or caregiver are knowledgeable and seek to gather clinical data regarding their specific case. The following are helpful items for patients to keep in mind.
    1. Keep important medical records including consultation notes, and the results of diagnostic tests, laboratory tests, and radiology studies.
    2. Know which triggers affect your symptoms, especially what foods or environmental factors (for example scents, paints, pollen, dust, and pets). It may be helpful to keep a detailed food diary including not just what was eaten but specifically how it was prepared (such as white bread toasted with butter and honey).
    3. Use data to track and identify symptom trends. It is helpful to keep a symptom log to record and identify trends, particularly the constellation of symptoms that may constitute a flare.
    4. Learn which treatments are most helpful including regular maintenance treatments and those treatments that are helpful when breakthrough and/or acute symptoms occur. It is also helpful to keep a list of which treatments have been tried previously and why they were discontinued. Allergies and intolerances to all medications should be listed.

  5. It requires patience and persistence when trying new medical treatments. Your doctor may tell you to start a medication at a lower dosage and titrate to maximal affect. The risks and benefits of continuing with a medication that may cause side effects should be discussed with your provider.

There are many options to consider when adopting a treatment regimen to manage the GI issues associated with MCA disorders and dysautonomia. There is no one standard approach and the regimen should be individualized to optimally treat symptoms and any co-existing conditions. In general, the pharmacological treatments either stabilize or inhibit the activation of mast cells or inhibit the effect of the specific chemical mediators that mast cells release. The cornerstone of treatment is to avoid known triggers of symptoms. Along these lines, the selection of an appropriate diet is essential to the management of GI symptoms. While specific foods should be avoided that provoke symptoms, the diet must be properly balanced to maintain proper nutrition and enhance health (see below). Patients should seek a healthy lifestyle in general that includes regular exercise (or movement to avoid deconditioning), appropriate coping mechanisms, and social support systems.

The following table may be used as a guide to identify appropriate pharmacological treatments. Medications are often added starting from the top of the list and proceeding down in a step-wise manner. Any medical regimen should be discussed first with the treating physician. (adapted from Current Allergy and Asthma Reports, February 2013 Vol 13 (1), “Immunology and Clinical Manifestations of Non-Clonal Mast Cell Activation Syndrome”, a PubMed Central Publication)

In addition to pharmacological treatments, when GI issues are present it is often helpful to find a diet that minimizes symptoms and helps to improve absorption of key micronutrients. Although specific diets have not been tested in patients with MCAD, many patients benefit from dietary interventions. While symptoms may be improved, it remains to be determined whether certain diets have an effect on MCA. While there are no scientifically validated diets for patients with MCAD, the following table outlines four dietary approaches that could be considered to improve the symptom profile in patients with MCAD.

Approach Examples Comments
Reduce Fermentable Sugars
A Low FODMAP Diet *(Fermentable Oligo-Di-Monosaccharaides and Polyols):+ Fructose (fruits, honey, high fructose corn syrup, etc.)+ Lactose (high dairy)+ Fructans/Inulins (wheat, onion, garlic)+ Galactans (beans, legumes, soy)+ Polyols (sweeteners, stone fruit)
These fermentable sugars are osmotic (pull water into GI tract) and not easily digested or absorbed. Of equal importance is the common fermentation that occurs by bacteria found in the intestines. This diet is particularly helpful in irritable bowel syndrome symptoms such as cramping, bloating, gas and diarrhea.
Reduce High Residue Fiber
Many fresh fruits and vegetables that we think of as “healthy” contain high residue fibers that are difficult to digest.+ Fresh fruits or vegetables with skin and seeds+ Heavy roughage such as big salads+ Raw cruciferous vegetables such as cabbage, carrots and celery
High fiber foods require more effort, including greater blood supply, for the smooth muscle walls of the GI tract to digest. This may cause or worsen post-brandial hypotension. Due to their rough nature these foods may exacerbate inflammation of the intestines. Reducing these foods also aides in reducing diarrhea and cramping.
Reduce Food Sensitivities
Common Food Sensitivities include:+ Gluten+ Lactose and Casein+ MSG+ Artificial sweeteners and preservatives+ Foods containing nitrates or sulfites+ Alcohol+ Citrus+ Chocolate. Many MCAD patients report a sensitivity to gluten. Reducing this ingredient may be a helpful place to start.
The difference between an IgE mediated (allergic reaction) and an IgG mediated (food sensitivity) is the time for symptoms to develop and the severity of symptoms. Often IgE mediated symptoms appear within minutes and can cause mild to life threatening anaphylaxis. IgG mediated food sensitivities usually appear within hours and are often mild in nature. (such as abdominal pain, bloating and diarrhea).
Build Your Own Diet: Remove Triggers & Eat Well Tolerated Foods
Using a food diary in combination with an elimination diet can be helpful in identifying foods that are triggers and foods that are well tolerated.+ Juicing raw greens, fruits and vegetables that are fairly low in sugar is often a helpful way to get high nutrition that is easy to absorb and low in sugar.
While this method takes much time and persistence, it is often the most helpful in finding improvement in symptoms.This method requires being careful when choosing food items, including reading labels and taking caution when eating out. When appropriate, ask for a detailed list of ingredients.

* Halmos EP et al, Gastroenterology 2014 Jan;146(1)
Research Creates Hope for the Future
Hope for the future is dependent upon further research that will enhance our understanding of the pathophysiology, genetic predispositions and effective mechanisms for preventing and remediating conditions involving MCAD and dysautonomias with co-existing GI symptoms. The following are key research areas that have been identified and relevant barriers, which may stand in the way.

There is a great need for improved diagnostics. Although there are clear diagnostic criteria that have been used over decades for Systemic Mastocytosis and Mast Cell Leukemia, more objective and accessible criteria are needed for MCAS. Although the members of The Mastocytosis Society Medical Advisory Board and other members of the medical community have worked diligently in recent years to define consensus statements regarding the diagnosis of MCAS, there remains wide variation in criteria used (for example whether or not a positive test for a mast cell mediator constitutes MCA and whether this should be tested at baseline or during a flare). There is also the difficulty that these criteria may not be accurate enough to detect MCA in a certain individual at a certain time. Since assuring an accurate diagnosis is essential for providing meaningful treatment and not to miss other important diagnoses, progress in this area of study is crucial as more patients and physicians learn about MCAD.

As research in the areas of GI and MCA emerge there needs to be an emphasis on the genetic factors that may predispose people to MCAD. This will be able to help patients with the diagnosis, prognosis, and treatment of their disease. In addition, it will be important to develop better ways to phenotype patients with MCAD. In MCAS, this may include the study of different protease expressions within an individual in the various organ tissues, whether or not a patient has a history of anaphylaxis, and which mast cell mediators are abnormally elevated and how this may correlate with specific symptoms or response to therapies.

Currently, there is a great divide amongst researchers studying dysfunction of the autonomic nervous system and those studying mast cell disorders. Often easy to assess diagnostic data such as orthostatic vital signs are overlooked by mast cell disorder specialists. Conversely, information reported in the patient history (such as a history of anaphylaxis, flushing, multi-organ system dysfunction and abdominal pain) that may require an MCAD workup is often overlooked.

Nutritional studies are difficult and often avoided by researchers for many reasons including the difficulty in defining meaningful criteria, poor compliance, poor patient recall and the need for full control over the diet. Nonetheless such studies would be helpful to provide scientific evidence to support the use of dietary interventions as a mainstay of treatment for MCAD.

Funding research has always been difficult. Now, more than ever, as NIH budgets decrease, the need for private funding and partnering with other organizations, even other countries, is clear. When writing research proposals in the United States, it is often helpful to pair the research need with a well known condition such as diabetes, heart disease and/or cancer. Often grant proposals, which focus on the lesser known or rare disorders, are rejected, as they don’t appear, at first glance, to meet the needs of a large patient population. Building collaborations to spread out available funding and resources will be important to continue funding this research.

Patients play a key role in advancing research. There are the traditional means for supporting research including participating in/or leading fundraisers for private organizations that fund research and writing to leaders who govern state and federal research funding. But often patients underestimate the power they have in creating awareness by educating friends, family and even their own physicians who are the leaders in advancing such clinical research. All patients who suffer with mast cell disorders (especially those whose cases are life threatening and/or complicated with dysautonomia and difficult GI issues) will benefit with greater understanding within these areas of research. It is this greater understanding that gives us all “hope for the future”.

Matthew J. Hamilton, M.D. practices in the Division of Gastroenterology and is active in research in the Mastocytosis Center for Excellence at Brigham and Women’s Hospital. He is also a faculty member at Harvard Medical School.

Kelly Freeman, M.S.M. is the Founding Director for
She has several years of experience in health care education and research.

Angela Hawkins

Vice President

Angela is an imaginative master fundraiser who has served the community for more than three decades as a volunteer. Many millions have been raised benefiting local private schools through her creativity, organizational and management skills which she’s used to mobilize committees and rally donors. In 2019, Angela joined the TDP board and chaired the Under The Umbrella Gala - which was her creation. The event was wildly successful, raising more than $500,000, catapulting TDP’s mission to new heights. Angela knows firsthand the hardships dysautonomia patients endure, as her daughter suffered through misdiagnosis for years. Through TDP her daughter found answers, spurring her on to provide the same for the many others searching for information and understanding.

Susan Rolston

Susan Rolston has more than 30 years’ experience leading high-performing organizations in public education and the nonprofit sector. For more than a decade, she was the Chief Executive Officer of Big Brothers Big Sisters of Pinellas County. Under her leadership, the organization expanded its donor base, increased its budget through diversified revenues, and ultimately improved the lives of 300% more children. After leading a highly successful merger with Big Brothers Big Sisters of Tampa Bay, she retired in 2014. Post retirement Susan traveled the country conducting agency audits for Big Brothers Big Sisters of America. Prior to her work with Big Brothers Big Sisters, Susan administered the Pinellas County Schools’ community involvement and school-based volunteer programs.

A longtime Pinellas resident, Susan has served in numerous public service and volunteer capacities. In 2015, she was appointed to the Juvenile Welfare Board by Governor Rick Scott and currently serves as Immediate Past Board Chair. She also served on the Board of Directors for the Early Learning Coalition of Pinellas County, Sixth Judicial Circuit Florida Bar Grievance Committee, and United Way Suncoast’s Community Impact Committee. Her most recent leadership appointment is with The Florida Bar’s Citizens Advisory Committee.

Susan’s adult daughter, Jayne took years to confirm a diagnosis of POTS and Mast Cell Activation. Jayne, like Kelly, is married with two teenage children; managing the chronic illness while helping to maintain a quality of life for Jayne’s family is a priority for Susan. After connecting with Kelly for guidance to help her family navigate the challenge of an accurate diagnosis and treatment plan, Susan has remained connected to TDP as a donor.

Al Ruechel

Al Ruechel, a graduate of Iowa State University, is a retired Television News Anchor from Bay News 9 serving the greater Tampa Bay area. He has been reporting and anchoring for more than 50 years, 34 of those years in the Tampa Bay area, interviewing literally thousands of newsmakers, politicians, subject matter experts, and even 6 presidents, and numerous presidential candidates

He has won dozens of anchoring and reporting awards working in Ames, Iowa, St. Louis, Missouri, Fort Myers, Florida, Albany, New York, and Tampa. He’s been awarded the Florida Medical Communicators Award two years in a row as well as 4 Emmy Awards for investigative and live on-air anchoring. He also volunteers at many of the Bay Area social service agencies as well as being on the Worship Team at his local church. He also hosts a bi-weekly interview segment on WPDS with Pinellas County School officials.

Al became involved with TDP through his friendship with Kelly and Nate Freeman. His background in short and long form interviewing made him a natural choice for leading the video discussions on our website.

He’s been married to the love of his life, Jennifer, since 1976. They have four children and 12 grandchildren, so far.

Tanya Baird Repka

Tanya Baird Repka has been active for many years in various community organizations and non-profit groups with a focus on fitness and youth advocacy. Tanya was director and head coach for 9 years of Tampa Bay Fit marathon training program and coached middle school track & field. She Co-Founded the St. Petersburg Road Runners Club in 2006, served as advisor on youth programs for Motion Sports Management, and has experience organizing and directing community, athletic and fundraising events. She is past President of the Osceola High School Athletic Boosters, where she oversaw the Christina Tournant Memorial Scholarship. Tanya has served on the race committee for the POTS Pi Day 5K as a committee member and Chair since 2017. She is the mother of three daughters, one of whom has POTS. She became involved in dysautonomia awareness efforts as a result of her struggle to find a diagnosis and treatment for her daughter. Tanya is a lifelong resident of St. Petersburg and an associate broker and sales consultant at Baird Realty Group, a family-owned full service real estate firm. Tanya studied Marketing and Business Administration at the University of Florida.

Susan Jinks

Susan Jinks is an Associate at Coldwell Banker Real Estate. She has personal experience with dysautonomia patients in her family and among her close friends. Susan joined TDP’s board in 2017. She has been a tremendous asset to TDP for organizing and hosting events and recruiting volunteers through her vast network of community connections.  

Jason Jensen

Jason Jensen, AIA, LEED AP, joined Wannemacher Jensen Architectural Firm in 2002. After gaining experience in New York City, he returned to St. Petersburg with a goal to innovate architecture for this generation in the Tampa Bay area.

Terence M. Igo

Terry Igo joined The Sanibel Captiva Trust Company at its inception in 2001 on Sanibel Island. He was instrumental in growing the initial client asset base, (now more than $2 billion), followed by a successful expansion into Naples and then to the Tampa Bay region in 2010. Since assuming the CEO position in 2013, Terry has grown the Florida footprint to also include Belleair/Clearwater and Tarpon Springs. In addition to directing company-wide operations, Terry serves as a member of the Asset Management Committee, the Risk Management Committee, Strategic Planning, and the Board of Directors.

He has served as advisor to many Florida non-profit organizations, assisting with capital and planned giving campaigns; increasing awareness of philanthropic giving. Terry currently serves on the Straz Center for the Performing Arts Board of Trustees and is a member of the CEO Council of Tampa Bay. He is also past chairman and founder of the Go Red for Men of Tampa Bay – American Heart Association, and a past trustee of Hodges University. He and his family resided on Sanibel-Captiva Islands and Fort Myers for 20 years before relocating to Tampa Bay in 2013.

John Hiers

Reverend John Hiers retired as rector for the Church of the Ascension in 2020. He has served his community as an Episcopal priest for over 40 years. John joined the board of TDP in January 2022 to help the organization connect with key supporters in the community to further TDP’s mission.

June Bryant, DNP, APRN, CPNP-PC

Dr. Bryant is an Assistant Professor at the University of Tampa, Department of Nursing, and a pediatric Nurse Practitioner with over 12 years' experience. She took her expertise on the road in November of 2021 as the owner of Dr. Joonie’s Examinavan. Dr. Bryant trains her nursing students in autonomic disorders from both professional and personal experience, having identified symptoms in her grade-school-age son. She gives educational presentations on behalf of TDP at local, state and national nursing conferences and trainings. She joined TDP’s board of directors in 2020. 

Hunt Brand

Hunt Brand is Chief Operating Officer (COO) for Network People with over 30 years' experience driving technology roadmaps, developing innovative secure systems, managing security, and streamlining operational processes. Hunt served his local community as Commissioner and Mayor of The City of Belleair Bluffs where he repaired relationships, improved partnerships and was known as the voice of reason. He was honored to join the TDP board of directors to help with online messaging and support systems to support our mission in 2018.

Karen Crown


A founding director of TDP, Karen brings a wealth of leadership and fundraising experience to the board. She has served as TDP’s president and is the immediate past president of the Joseph F. Cornelius Family Foundation; past president of the Junior League of Clearwater/Dunedin; past president of Suncoast Family YMCA; past president of St. Paul School Parents’ Association; past president of Tri Delta Clearwater Alumnae Association. Karen’s professional experience includes her roles at Executive Director of UPARC Foundation (now ARC of Tampa Bay Foundation) and Executive Director of the Florida Blood Services Foundation. Additionally, she has served on the boards of the Salvation Army Advisory Board; Isaiah’s Inn; Leadership Pinellas; Leadership Tampa Bay; Church of the Ascension Vestry; Morton Plant Community Affairs; Clearwater Library Foundation; UPARC Foundation; American Red Cross; Florida Prostate Cancer Center Network; Association of Fund-Raising Professionals and Carlouel Yacht Club.

Beth Pike


Beth Pike became involved with The Dysautonomia Project when her daughter, at age 25, became acutely ill. Her daughter spent more than 60 days in 2 hospitals trying to figure out what was wrong with her, and why she was so desperately ailing. Her daughter is still currently a research patient at the NIH hoping to shed light on the autonomic nervous system for others. Her professional career as a physical therapist assistant for over 25 years serves her in educating patients about Dysautonomia and what’s happening to their bodies. Patients need safe and manageable exercise protocols to improve their overall health and mental wellbeing . Beth serves as Secretary of TDP and on the board of directors in order to help create hope for dysautonomia patients, and their families, so they won't have to go through the despair and isolation that her family has suffered

Nate Freeman

Interim Treasurer, Past-President

Nate and Kelly Freeman founded Network People, Inc. in 1996, a company that specializes in IT security/management and website digital marketing. Nate is the president of Network People. He holds a bachelor’s degree from Willamette University in Business Economics. He co-founded The Dysautonomia Project with Kelly in 2014 and has served as its president and currently serves as Treasurer. Nate serves on the board of the Joseph F. Cornelius Foundation as Treasurer.  He and Kelly are passionate about building and strengthening marriages and currently serve as leaders in a marrieds ministry at church.  He is also an active alumni member of Leadership Pinellas.  Previously, Nate served on the board of the ARC Tampa Bay Foundation and as the Technology Advisory Board of the YMCA. 

Alexandra Key


Alexandra is a founding board member of TDP. She witnessed first hand the dismantling of TDP founder Kelly Freeman’s life as her dysautonomia diagnosis unfolded. Through this gained understanding, she has helped several friends navigate to a diagnosis with TDP resources. Alexandra is pleased to contribute to this worthy cause by using her past experience in non-profit work and is greatly encouraged by the strides made since TDP’s inception.

Carlton Ward


Mr. Ward received a B.S.A. in 1970 and a J.D. in 1973 from the University of Florida. A native of Tampa, Florida, Mr. Ward has been involved in many professional and community activities since moving to Clearwater, having served on organizations, including the Clearwater Bar Association, the American Bar Association Real Property, Probate and Trust Law Division, American Bar and Florida Bar Young Lawyers Divisions. Mr. Ward is a former President of the Pinellas Real Estate Law Council and Past Chairman of the Greater Clearwater Chamber of Commerce, the Pinellas County United Way and the United Way of Tampa Bay. Mr. Ward has lectured frequently regarding real property and condominium law. His practice includes real estate, corporate, condominium, commercial, banking, wills and trusts and general law.