Our Staff

We are pleased to have a staff of dedicated individuals sharing our passion to provide assistance and education to our EDS Awareness member community:

John Ferman - President - Co-Founder
John Ferman – President – Co-Founder
Richard Riemenschneider - Senior Consultant - Arizona Support Group Leader
Richard Riemenschneider – Senior Consultant – Arizona Support Group Leader. (We are very sorry to announce our board member Richard Riemenschneider passed in late 2023.)
Linda Bluestein, MD. Volunteer Medical Consultant. Founder and Host of the Bendy Bodies with the Hypermobility MD Podcast.
Andrea Julian - Secretary - Dayton Support Group Leader
Andrea Julian – Secretary – Dayton Support Group Leader
Dr. John Mitakides
Dr. Mitakides is a leading expert in the field of treatment of TMJ and craniofacial pain. (We are very sorry to announce our board member Dr. Mitakides passed in late 2023.)
Jon Rodis
Jonathan Rodis Founder and Co-leader-Ehlers-Danlos New England Support Group
Deanna Hamm – Co-Founder – Past Cleveland Support Group Leader
Martha Riemenschneider – Nursing Consultant

Media Team

Since May 2021, our dedicated media team brings the latest EDS news to you via our Chronic Pain Partners Post, a monthly newsletter featuring original content by and for the EDS community. 

Karina Sturm is our Editor-in-Chief for all things media on this website as of May 2021. She is a journalist (MA) and lives with EDS and many other comorbid conditions.

Susan Jackson is a volunteer writer.

Kate Schultz, a woman with curly brown hair is sitting in her living room and smiling brightly

Kate Schultz is a writer, a former high school English teacher and theatre director/stage manager, and a former software tester. She lives in Madison, WI, with her husband, three cats, and classical Ehlers-Danlos syndrome.

A woman with shoulder-long blonde hair and a black beanie.

Crystal Sullivan is a volunteer writer and lives with several rare diseases. She has worked at the local, state, and federal level fighting for patient’s rights. In between doctor’s appointments, you can find her writing, wandering the woods, dancing like nobody’s watching, or getting into some sort of interesting trouble around the San Francisco Bay Area.

Jackie Saa is a volunteer writer, zebra warrior and advocate.

Regular Guest Authors & Past Volunteer Writers

Beth Miller was a volunteer writer, English/ESL/Creative writing Instructor, Movement Educator.

Sarah Cook was a volunteer writer for our newsletter; she is also a Physician Assistant and Medical Writer.

Get Webinar Announcements And Our FREE Guide

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Upcoming and Previous Webinar Speakers

  • webinar-image

    Ross A. Hauser, MD
    10 Low-cost ways to improve symptoms of peripheral joint and spinal instabilities from hEDS, including brain fatigue, pain, POTS, MCAS and more.

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  • webinar-image

    Bonnie Nasar RDN
    “How to Build an EDS Plate: Feel Better with Food”?

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  • webinar-image

    Presenter: Jeannie Di Bon   MA PMA-CPT
    Title: “A Pain in the Hypermobile Neck”

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  • webinar-image

    Presenter: Dr. Eli Penn
    Title: hEDS and the Gastrointestinal Tract

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  • webinar-image

    Pradeep Chopra, MD
    “Management of Long Covid with EDS”

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  • webinar-image

    Eloise Stager, LMT, CST-D
    “The Role of CranioSacral Therapy in
    Pain Management and ANS Regulation”

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  • webinar-image

    Anne Maitland, M.D., Ph.D
    “Beyond allergies- mast cell activation diseases!”

    Learn More

  • webinar-image

    Clair Francomano MD
    “EDS and Hypermobility Spectrum Disorders – Overview of Diagnosis and Management”

    Learn More

  • webinar-image

    Sonny Mullen
    “A Guide to Medical Fundraising”

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  • webinar-image

    Karina Sturm
    New Feature-Length Ehlers-Danlos Documentary
    “We Are Visible”

    Learn More

  • webinar-image

    Podcast Interview with Karina Strum
    ‘We are Visible’ Podcast Interview

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  • webinar-image

    Andrea Julian
    “Starting and Maintaining a Successful Support Group”

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  • webinar-image

    Maria Dastur, M.B.A.
    Organizing and Managing your Facebook and Social Media

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  • webinar-image

    Alan G. Pocinki M.D.
    Sleep Disorders in EDS

    Learn More

  • webinar-image

    Ross A. Hauser, MD
    Consequences and Resolution of Joint Instabilities in H- EDS

    Learn More

  • webinar-image

    Bonnie Nasar RDN
    “Optimizing nutrition to Decrease Brain Fog, Fatigue, & Pain”

    Learn More

  • webinar-image

    Jeannie Di Bon. MA, PMA-CPT
    “How can Pilates help with my EDS Symptoms”

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  • webinar-image

    Petra Klinge MD
    “Managing Life with Neurological Symptoms and EDS”

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  • webinar-image

    Cathy L. Pederson, Ph.D
    “Understanding the Relationship between Chronic Illness and Suicide”

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  • webinar-image

    Patrick Agnew DPM
    “Foot and Ankle Treatments for EDS”

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  • webinar-image

    Susan Tran, PhD
    “Partnering with Families to Improve Functioning in Youth with EDS”

    Learn More

  • webinar-image

    Paolo A Bolognese, MD
    Chiari I Malformation, EDS, and Craniocervical Instability

    Learn More

  • webinar-image

    Lauren Stiles, JD
    “Understanding the Relationship Between Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome”

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  • webinar-image

    Jordan Tishler, MD
    Medical Cannabis – Pain Relief for EDS

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  • webinar-image

    Jeannie Di Bon, MA, PMA-CPT
    “Strengthen and Control Your Hypermobile Core With Pilates”

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  • webinar-image

    John Ferman
    Online EDS Physician CME Education

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  • webinar-image

    Anne Maitland, MD, PhD
    “Mast Cell Activation Disorder”

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  • webinar-image

    Joshua Milner, M.D.
    “Update on Tryptase Research”

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  • webinar-image

    Delia Chiaramonte, MD
    “Practical Stress Management: A Mind-Body Approach”

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  • webinar-image

    Manu Sood, MD
    Katja Kovacic, MD
    “Gastrointestinal Motility Disorders and Cyclic Vomiting”

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  • webinar-image

    Gisela Chelimsky, MD
    “Hypermobile EDS and Gastrointestinal Issues”

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  • webinar-image

    Pradeep Chopra, MD
    “Management of complex pain in children and adults with EDS”

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  • webinar-image

    Pradeep Chopra, MD
    “EDS Pain Management – Connecting the DOTS… part 3”

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  • webinar-image

    Dr. Ajoy Sarkar
    “Ehlers-Danlos Syndrome Hypermobility Type in the UK: Missed or Just Misunderstood?”

    Learn More

  • webinar-image

    Sara Williams, PhD
    “Biofeedback: Training your Body to Relax”

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  • webinar-image

    Jan Dommerholt, DPT
    “Physical Therapy for EDS – Part 2”
    Why does it hurt all of the time?

    Learn More

  • webinar-image

    Markus-Frederik Bohn, PHD
    “Tenascin X and Ehlers-Danlos Syndrome”

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  • webinar-image

    Dr. Marco Castori

    “Multidisciplinary Diagnostic and Management Approach to the EDS Patient”

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  • webinar-image

    Professor Claude Hamonet and Dr. Isabelle Brock

    “A French Perspective on Ehlers Danlos”

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  • webinar-image

    Dr. Delia Chiaramonte

    “An Integrative Approach to Pain Management”

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  • webinar-image

    Dan Doherty — YouScript / Genelex Corp.

    “Pharmacogenetic Testing to Assess Altered Drug Metabolism”

    Learn More

  • webinar-image

    Dr. Alan Pocinki

    “Psychiatric Misdiagnoses in EDS: When is Anxiety not Anxiety?”

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  • webinar-image

    Dr. William Ericson

    “Orthopedic Issues in the EDS Hand, Wrist and Arm”

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  • webinar-image

    Dr. Norman Marcus

    “EDS & Pain”

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  • webinar-image

    Dr. Lawrence Afrin

    “Mast Cell Activation Syndrome”

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  • webinar-image

    Diane O’Leary, PhD

    “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients

    Learn More

  • webinar-image

    John Ferman and Deanna Hamm

    “World-Wide EDS Survey Results” by EDS Awareness
    (2544 respondents from 26 countries)

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  • webinar-image

    Sara Williams, PhD

    “Cognitive Behavioral Therapy as a Coping Skill for EDS”

    Learn More

  • webinar-image

    Dr. Anne Maitland

    “Mast Cell Activation Syndrome in EDS Patients (Part 2)”

    Learn More

  • webinar-image

    Dr. Neil Schechter

    “Chronic Pain Hypermobile Children”

    Learn More

  • webinar-image

    Karen Foulks, OTR/CHT
    Jesse Garris, Silver Ring Splint Co.

    “Anatomy and SilverRing™ Splints for Ehlers-Danlos Hands”

    Learn More

  • webinar-image

    Dr. Holly Gilmer

    “Chiari Malformation in EDS”

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  • webinar-image

    Dr. Blair Grubb

    “Postural Orthostatic Tachycardia Syndrome (POTs)”

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  • webinar-image

    Trish Meegan, DPT, L, ATC

    “Physical Therapy for EDS: Including how your posture and thorax/ribcage affects your PT program”

    Learn More

  • webinar-image

    Dr. Patrick Agnew

    “Soft Tissue Surgery in Collagen Disease (for EDS Feet & Ankles)”

    Learn More

  • webinar-image

    Dr. Petra Klinge

    “Tethered Cord Syndrome in Ehlers-Danlos”

    Learn More

  • webinar-image

    Kelly Clancy, OT

    “New and Emerging Manual Therapy Approaches for EDS”

    Learn More

  • webinar-image

    Dr. Clive Bridgham

    “Chronic Pain Alternatives – with focus on inflammation and nutrition”

    Learn More

  • webinar-image

    Kevin Muldowney, MSPT

    “Physical Therapy Protocol for Ehlers-Danlos Syndrome” (using the new EDS Physical Therapy Book)

    Learn More

  • webinar-image

    Dr. Mitzi Murray

    “How, Why and When: Genetic Testing in EDS for the Non-Geneticist”

    Learn More

  • webinar-image

    Ellen Lenox Smith

    “Living Life Again with Dignity Using Medical Marijuana”

    Learn More

  • webinar-image

    Dr. Joan Stoler

    “Update on Complications and Rare Forms of EDS”

    Learn More

  • webinar-image

    Jennifer Ortiz, MPT, WSC

    “Physical Therapy for Sexual Dysfunction in EDS”

    Learn More

  • webinar-image

    John Ferman

    “Support Groups for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. John Mitakides

    “Musculoskeletal Headaches in EDS”

    Learn More

  • webinar-image

    Dr. Patrick Agnew

    “Foot & Ankle Issues with EDS”

    Learn More

  • webinar-image

    Dr. Hal Dietz

    “Connective Tissue Disorder Research”

    Learn More

  • webinar-image

    Dr. Theoharis Theoharides

    “Mast Cell Disorders”

    Learn More

  • webinar-image

    Dr. Brad Tinkle

    “Introduction to Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. Ronald Jaekle

    “Ehlers-Danlos and Pregnancy”

    Learn More

  • webinar-image

    Dr. Manu Sood

    “Gastrointestinal Disorders in EDS”

    Learn More

  • webinar-image

    Dr. Forest Tennant

    “Managing Centralized Intractable Pain in Ehlers-Danlos”

    Learn More

  • webinar-image

    Cynthia Allen, GCFP, STMI

    “The Feldenkrais Method”

    Learn More

  • webinar-image

    Dr. Mark E. Lavallee

    “Exercise is Medicine”

    Learn More

  • webinar-image

    John Ferman

    “Support Groups for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. Howard R. Epps

    “Orthopaedic Considerations in EDS”

    Learn More

  • webinar-image

    Jan Dommerholt, DPT

    “Physical Therapy for Ehlers-Danlos, Part 1”

    Learn More

  • webinar-image

    Dr. Henry Burkholder

    “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”

    Learn More

  • webinar-image

    Dr. Peter Byers

    “Vascular Ehlers-Danlos Syndrome / EDS type IV”

    Learn More

  • webinar-image

    Subinoy Das, MD, FACS, FARS

    “Sinus Care for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Frank Gargano PT, DPT, OCS, CIDN, MCTA, CWT

    “Dry Needling for EDS Pain Management: Can muscle performance be improved?”

    Learn More

  • webinar-image

    Diana Lebron, MD

    “Headaches and Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Shweta Dhar, MD, MS, FACMG

    “Coordination of Care in Adults with EDS”

    Learn More

  • webinar-image

    Kathleen Kane, ESQ

    “Applying for Disability”

    Learn More

  • webinar-image

    Dr. Richard Barnum
    “EDS and Psychiatric Illness Misdiagnoses”

    Learn More

  • webinar-image

    Dr. Anne Maitland
    “Mast Cell Activation Syndrome” Part 1

    Learn More

  • webinar-image

    Dr. Alan Pocinki
    “Chronic Pain, Poor Sleep, Depression, and Fatigue in EDS”

    Learn More

  • webinar-image

    Dr. Derek Neilson
    “Proving the obvious: Next Steps for the Demystification
    of the Ehlers-Danlos Hypermobility Type”

    Learn More

  • webinar-image

    Dr. Peter Rowe
    “Managing Orthostatic Intolerance in EDS”

    Learn More

  • webinar-image

    Prof Joel Lamoure, RPh., DD., FASCP
    “Medical Psychiatry in Pain Management”

    Learn More

  • webinar-image

    Eric Palmer, Orthotist
    “Bracing for EDS”

    Learn More

  • webinar-image

    Dr. John Mitakides
    “TMJ, Cervical Instability and EDS”

    Learn More

  • webinar-image

    Dr. Staci Kallish
    “Cardiac Manifestations in EDS”

    Learn More

  • webinar-image

    “EDS and Pain… Connecting the Dots” Part 2

    Pradeep Chopra, MD

    Learn More

  • webinar-image

    Presenter: Kevin Muldowney, PT Click here for a link to the announcement page Video link is on this page

    Learn More

  • webinar-image

    Presenter: Michael, Healy, DPT Click here for a link to the announcement page  Video link is on this page

    Learn More

  • webinar-image

    Dr. Kenneth Goldschneider
    Pain Management for EDS

    Learn More

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