The Dysautonomia Project

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The Dysautonomia Project

The Project creates awareness and raises funds for dysautonomia education in the medical community, among healthcare providers and the general population.
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What is Dysautonomia? Dysautonomia is an umbrella term used to describe any disorder of the autonomic (or Involuntary) nervous system. These disorders usually involve abnormal symptoms in many organ systems such as cardiac, gastrointestinal, neurological, pulmonary, as well as others, and can range from mild to disabling. A few rare forms of dysautonomia may be considered life threatening. What is

The Dysautonomia Project? As an invisible illness, Dysautonomia is likely the most misdiagnosed medical condition of all time. Although many decades of clinical research precede this project, “Dysautonomia is not taught in medical schools,” according to Dr. Thomas Chelimsky, President of the American Autonomic Society. Most patients wait many many years, seeing multiple specialists, before getting a proper diagnosis - and most are initially misdiagnosed with psychiatric disorders. We believe that by educating primary care physicians and pediatricians - the first line of defense in diagnoses - about Dysautonomia, patients will see a faster route to diagnosis, and hopefully better outcomes. GETTING STARTED: We are beginning this journey by launching in the Tampa Bay, FL area. From here we will eventually branch out to communities throughout the US, via our amazing Volunteer Army. It is these volunteers - made up primarily of patients & their loved ones - who will bring The Dysautonomia Project into their own communities. THE BIG GOAL: To train an interdisciplinary team of local physicians in every major community in the United States in 10 years. These physicians will be able to assess, treat and work in consultation with autonomic experts. OUR 10 YEAR VISION:
To partner with patients, physicians, health care provides, hospitals as well as local, state and national leaders to provide easy to access and easy to understand education about dysfunction of the Autonomic Nervous System (ANS) based on more than 30 years of clinical data from leading Dysautonomia researchers around the world. By achieving this vision we would:

• Reduce health care costs by eliminating unnecessary physician visits, diagnostic tests and services.
• Serve as a model in the area of introductory Dysautonomia education for physicians around the world.
• Strive to make "Dysautonomia" a household name. The Dysautonomia Project is a federally approved 501(c)(3) not for profit organization.

02/20/2026

Emphasis on slide 3 🫶

02/17/2026

Feb. 17 is Random Acts of Kindness Day. 🩵

For those living with chronic illness, small acts can mean everything. A text that says “thinking of you.” A meal dropped off. Believing someone when they say they are not okay… swipe for more ideas!

Today, we celebrate everyday kindness that reminds people they are seen and supported. Kindness lives here, in listening, in showing up, and in meeting someone exactly where they are.

We would love to hear from you. Share a random act of kindness that brightened your day, or one you have done to help someone else feel a little less alone. 💬🩵

02/14/2026

Save the date - March 14, 2026 🩵

Pi Day Give Day is exactly one month away! Join us on March 14th as we honor the life of Christina Tournant and support the millions of individuals living with dysautonomia who are still searching for answers.

Christina was a vibrant young woman who loved math and proudly called Pi Day her favorite day of the year. After years of being told her very real illness was “all in her head,” she was left unvalidated and without hope. Pi Day Give Day exists to ensure other patients do not face the same journey alone.

This day of giving supports The Dysautonomia Project’s mission to educate patients, families, healthcare professionals, and communities, and helps fund DysCourse, a vital patient and family education event.

We invite you to stand with us in Christina’s memory, and in honor of every patient still fighting to be seen, believed, and supported. More details coming soon!

02/13/2026

Love languages: DYS edition. 💌 What’s your love language? Share in the comments! 💬

Hope you have a very lovely Valentine’s (or Galentine’s) Day!🌹

02/10/2026

Created in honor of Christina Tournant, and every patient who was told it was “all in their head.”

DysCourse 2026 returns Friday, June 5, 2026, bringing education, empowerment, and hope to patients and caregivers impacted by dysautonomia. 🩵

More details TBA.

02/06/2026

What is one small way someone could check in that actually feels supportive to you? Share in the comments and let’s talk about it! 💬

Feb. 6 is Time to Talk Day. A reminder that mental health is a vital part of the conversation about POTS, too. 🧠

POTS, and other autonomic disorders, affect the body and the mind. In addition to this, living with chronic symptoms, uncertainty, and frequent dismissal can lead to isolation, despair, depression, or thoughts of hopelessness. These feelings are not a personal failure, and are signals that support is needed.

Mind body disorders are real, and caring for your mental health is part of caring for your physical health. Talking about how you are truly doing, emotionally and mentally, can be a powerful step toward healing. Reaching out to a trusted person or a mental health professional matters, especially when things begin to feel heavy or overwhelming.

If you are struggling, please know this. You are not alone. Your experience is valid. And support is needed and deserved. 🩵

To learn more + find patient resources, visit The Dysautonomia Project website and click on the “Patient” tab! 💻

02/03/2026

Are you diagnosed or undiagnosed? Either way, you deserve clarity.

Check out our FREE, educational tool built to empower patients with clearer insight and a stronger starting point for care. Visit the front page of our official website and tap the Patient Assessment icon, or search “Patient Assessment” in the search bar.

Knowledge is power. And this tool is here to support you every step of the way. 🩵

01/30/2026

Two programs. One shared mission. The Clinician Program and the Residents Course are now live, both working in real time to bridge the gap between patients and providers in autonomic care.

Swipe through to see how these programs directly support patients and shape the future of autonomic health. We are deeply grateful to the clinicians and faculty whose expertise, dedication, and commitment make this work possible.

Massive thank you to our TRC 2026 course supporters and grantors, Judy and Bob Cottrell, the JVK Foundation, and Carole Gerst, MD, MPH. Also, a huge thank you to Foundation for helping us expand our impact and transform how dysautonomia is understood and treated.

Last but not least, we are so grateful for our TRC + TCP faculty and providers who joined us from around the globe to attend these groundbreaking courses. The future of autonomic medicine is here!

01/30/2026

Educating doctors. Bringing hope to patients. 🤍

Check out these behind the scene moments from The Residents Course, a three day intensive in autonomic medicine in collaboration with The American Autonomic Society.

This program brings together PGY2+ residents and fellows across cardiology, internal medicine, neurology, pediatrics, family practice, physical medicine/rehab and gastroenterology to expand the future of autonomic care.

With heartfelt thanks to our incredible TRC faculty and Dr. Marie-Claire Seeley, CEO and Founder of the Australian POTS Foundation, who joined us for the week to share global expertise and insight.

To the residents who traveled, showed up curious, and committed to learning, thank you. You are the ripple effect that will change outcomes for patients everywhere. 🩵

And sincere gratitude to our 2026 course supporters and grantors, Judy and Bob Cottrell, the JVK Foundation , and Carole Gerst, MD, MPH, for making this course possible.

Be sure to double-check if you’re following us to stay tuned for more on TRC! 📲

01/28/2026

Less than 2 days left. On January 30, 2026, The Dysautonomia Project and the American Autonomic Society will present The Clinician Program, a one day, CME accredited medical education course offered in person and virtually.

Led by world-leading autonomic specialists, this program is designed for providers across all specialties seeking practical, clinically relevant training in autonomic dysfunction. 🩺

As demand for autonomic care continues to grow and formal training remains limited in medical education, this course provides an essential opportunity to expand diagnostic confidence, improve patient care, and close the gap between patients and providers.

Registration closes soon. Visit our website and type “The Clinician Program” into the search bar to learn more, meet the faculty, and register online! 📲💻

📅 Date: January 30, 2026 from 8AM-5PM.
🖥 Virtual and in-person options
✅ The Florida Medical Association designates this live activity for a maximum of 7.00 AMA PRA Category 1 Credits ™.

Address

Tampa, FL

Telephone

727-304-1547

Website

http://thedysautonomiaproject.org/

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