Our Events
Our Work
Explore our biweekly event series dedicated to raising awareness, sharing education, and building a supportive community around for Ehlers-Danlos Syndrome (EDS) and its related comorbidities.
Here, you'll find recordings of our insightful sessions designed to empower and connect individuals navigating these challenges. Our events run every two weeks ensuring fresh and meaningful content year-round.
Welcome to the Paramotion EDS Educational Events!
ParaMotion Launch Party at Metaverse Space Opening of InesLand on Spatial
This event is filled with educational content raising awareness for EDS, MCAS, ADHD, Autism, and chronic pain. What to expect:
🗣 Speakers sharing their stories
👩🎨 Art Exhibition on the theme of chronic pain and neurodivergence
🎶 Music concerts and new drops from Top Meta DJs
🧜♀️ A tour of InesLand, capturing the beauty of a Mediterranean sunset
Connection between EDS & ADHD
🧑🎓 We had a recap about what EDS/HSD is and their symptoms
🧑🎓We learned about the connection between EDS & ADHD
💪We exercised together and talked about breathing and alignment
💃We danced to new music drops
🪽We got inspired by art and even flew around the island!!
Zebra Strong Mindset
We talked about:
🧑🎓 Mindset and why it's important
🗣 Grief and it's stages
🧑🎓Trauma of chronic illness and medical gaslighting
🦓 Tips and Tools for management
EDS Diagnostics and Treatment with
Guest John Mickel
In this session we talked about telomere-to-telomere (T2T) assembly of the human genome which became possible in 2022. So 3 years later, the first EDS Patient John Mickel managed to get his diagnoses based on his T2T genome sequencing and he is sharing with us his inspiring story and what that means for the entire EDS community. The Ehlers-Danlos Society is also working with John and his Stanford colleagues in AI research in EDS.
Mast Cell Activation Syndrome
Join the ParaMotion team for an open discussion on MCAS, a condition that often goes hand in hand with EDS. We dive into what it is, why it happens, and how to manage symptoms more effectively. Whether you’re personally affected or just curious to learn, this is a space to share insights and connect with others.
Movement Principles
Join the ParaMotion team for a deep dive into movement and the body’s mechanics. We explore how fascia, joints, and muscles work together, and how movement can support parasympathetic nervous system regulation for better balance and well-being. Whether you're looking to move more efficiently or simply understand your body better, this session is for you!
POTS & EDS
Join the ParaMotion team for an in-depth discussion on Postural Orthostatic Tachycardia Syndrome (POTS)—what it is, why it happens, and how to manage symptoms. We explore the connection between POTS, EDS, and the autonomic nervous system, plus practical strategies for improving daily life.
Microbiome & EDS
Join the ParaMotion team and special guests from Microbiome DAO for an insightful discussion on the microbiome’s role in Ehlers-Danlos Syndrome (EDS). We dive into gut health, dysbiosis, intestinal permeability, and how microbiome imbalances affect symptoms. Plus, we share practical strategies for healing and optimizing well-being.