Upcoming and Previous Webinar Speakers

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    Chiaramonte, Delia, MD presents

    Free Webinar: “An Integrative Approach to Pain Management in EDS”

      TOPIC: “An Integrative Approach to Pain Management” PRESENTER: Dr. Delia Chiaramonte Sponsored by Ehlers-Danlos Hoofbeat Run Walk-N-Roll and www.bodysupportstore.com...

    Learn More

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    Doherty, Dan presents

    Free Webinar: Pharmacogenetic Testing to Assess Altered Drug Metabolism

        TOPIC:   “Pharmacogenetic Testing to Assess Altered Drug Metabolism”  Struggling with Medications?  This May Help. PRESENTER:  Dan...

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    Pocinki, Alan, MD presents

    Free webinar: “Psychiatric Misdiagnoses in EDS: When is Anxiety not Anxiety?” – Recording Available

      TOPIC: “Psychiatric Misdiagnoses in EDS: When is Anxiety not Anxiety?” PRESENTER: Alan Pocinki, MD, FACP Sponsored by Ehlers-Danlos Hoofbeat Run...

    Learn More

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    Ericson, William, MD presents

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

    Dr. William Ericson presents “Orthopedic Issues in the EDS Hand, Wrist and Arm” Sponsored by www.bodysupportstore.com  “Find out what hurts...

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    Marcus, Norman Jay, MD presents

    Free Webinar: “EDS & Pain”

      Watch the recording of this free webinar.   Sponsored by www.bodysupportstore.com  TOPIC: “EDS & Pain” PRESENTER: Dr. Norman Marcus...

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    Afrin, Lawrence, MD presents

    Free Webinar: “Mast Cell Activation Syndrome”

      TOPIC: “Mast Cell Activation Syndrome” PRESENTER: Dr. Lawrence Afrin     Click IMAGE for the recording of this presentation....

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    O'Leary, Diane, PHD presents

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

    Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com      TOPIC: “All in Your Head”: The Problem of...

    Learn More

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    Ferman, John, DTM presents

    Free Webinar: “Results of the EDS Awareness World-Wide Survey”

    Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com    TOPIC: Results of the EDS Awareness World-Wide Survey PRESENTERS: John...

    Learn More

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    Williams, Sara, PhD presents

    Free Webinar: “Cognitive Behavioral Therapy as a Coping Skill for EDS”

        Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com    TOPIC: “Cognitive Behavioral Therapy as a Coping...

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    Maitland, Anne, MD presents

    Free Webinar: “Mast Cell Activation Syndrome” Part 2

    Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com  . . TOPIC:  “Mast Cell Activation Syndrome in EDS Patients...

    Learn More

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    Schechter, Neil, MD presents

    Free Webinar: “Chronic Pain in Hypermobile Children”

      Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com    . TOPIC: “Chronic Pain Hypermobile Children”   PRESENTER: Dr....

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    Ring Splints presents

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

      Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com   TOPIC: “Anatomy and SilverRing™ Splints for Ehlers-Danlos Hands”...

    Learn More

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    Gilmer, Holly, MD presents

    Free Webinar: “Chiari Malformation and EDS”

      Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com     TOPIC: “Chiari Malformation in EDS” PRESENTER: Dr. Holly...

    Learn More

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    Grubb, Blair, MD presents

    Free Webinar: “Postural Orthostatic Tachycardia Syndrome (POTs)”

      Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com   Presenter: Dr. Blair Grubb Topic: “Postural Orthostatic Tachycardia Syndrome...

    Learn More

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    Meegan, Trish, DPT presents

    Free Webinar: “Physical Therapy for EDS”

      Watch the recording of this free webinar.     Sponsored by www.bodysupportstore.com  TOPIC:  “Physical Therapy for EDS: Including how...

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    Agnew, Patrick, DPM presents

    Free Webinar: “New Surgery for EDS Feet and Ankles”

    Presenter:  Dr. Patrick Agnew Click here for a link to the announcement page

    Learn More

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    Klinge, Petra, MD presents

    Free Webinar: “Tethered Cord Syndrome in Ehlers-Danlos”

      Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com TOPIC: “Tethered Cord Syndrome in Ehlers-Danlos” PRESENTER: Petra Klinge,...

    Learn More

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    Clancy, Kelly, OT presents

    Free Webinar: “New and Emerging Manual Therapy Approaches for EDS”

    PRESENTER: Kelly Clancy, OT Click here for a link to the announcement page

    Learn More

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    Bridgham, Clive, MD presents

    Free Webinar: “Chronic Pain Alternatives – With Focus on Inflammation and Nutrition”

      PRESENTER: Dr. Clive Bridgham Click here for a link to the announcement page

    Learn More

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    Muldowney, Kevin, MPT presents

    Free Webinar: “Physical Therapy Protocol for Ehlers-Danlos Syndrome”

      PRESENTER: Kevin Muldowney, MSPT Click here for a link to the announcement page

    Learn More

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    Murray, Mitzi, MD presents

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

    PRESENTER: Dr. Mitzi Murray Click here for a link to the announcement page

    Learn More

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    Smith, Ellen Lenox presents

    Free Webinar: “Living Life Again with Dignity Using Medical Marijuana”

    PRESENTER: Ellen Lenox Smith Click here for the link to the announcement page

    Learn More

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    Stoler, Joan, MD presents

    Free Webinar: “Update on Complications and Rare Forms of EDS”

    PRESENTER: Dr. Joan Stoler Click here for a link to the announcement page

    Learn More

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    Ortiz, Jennifer, MPT presents

    Free Webinar: “Physical Therapy for Sexual Dysfunction in EDS”

    PRESENTER: Jennifer Ortiz, MPT, WSC Click here for the link to the announcement page

    Learn More

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    Ferman, John, DTM presents

    Free Webinar: “Support Groups for Ehlers-Danlos Syndrome”

    Presenter: John Ferman Click here for a link to the announcement page

    Learn More

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    Mitakides, John, DDS presents

    Free: Webinar: “Musculoskeletal Headaches in EDS”

    PRESENTER: Dr. John Mitakides Click here for a link to the announcement page

    Learn More

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    Agnew, Patrick, DPM presents

    Free Webinar: “Foot & Ankle Issues in EDS”

       PRESENTER:  Dr. Patrick Agnew Click here or a link to the announcement page

    Learn More

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    Dietz, Hal, MD presents

    Free Webinar: “Connective Tissue Disorder Research”

    PRESENTER: Dr. Hal Dietz     Click here for a link to the announcement page 

    Learn More

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    Theoharides, T. C., MD presents

    Free Webinar: “Mast Cell Disorders”

      PRESENTER:   Dr. Theoharis Theoharides   Click here for a link to the announcement page

    Learn More

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    Tinkle, Brad, MD presents

    Free Webinar: “Introduction to Ehlers-Danlos Syndrome”

    Presenter: Dr. Brad Tinkle     Click here for a link to the announcement page

    Learn More

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    Jaekle, Ron, MD presents

    Free Webinar: “Pregnancy and EDS”

    TOPIC:  “Ehlers-Danlos and Pregnancy” PRESENTER:   Dr. Ronald Jaekle   Click here for a link to the announcement page

    Learn More

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    Sood, Manu, MD presents

    Free Webinar: “Gastrointestinal Disorders in EDS”

    TOPIC:  “Gastrointestinal Disorders in EDS” PRESENTER:   Dr. Manu Sood Click here for a link to the announcement page

    Learn More

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    Tennant, Forest, MD presents

    Free Webinar: “Managing Centralized Pain in Ehlers-Danlos”

    PRESENTER:   Forest Tennant, MD, DrPH Click here for a link to the announcement page

    Learn More

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    Allen, Cynthia GCFP presents

    Free Webinar: “The Feldenkrais Method and other Somatic Approaches to Improve Function and Ease”

    Presenter: Cynthia Allen Click here for a link to the announcement page

    Learn More

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    Lavallee, Mark, MD presents

    Free Webinar: “Exercise is Medicine”

      Presenter: Mark E. Lavallee, M.D   Click here for a link to the announcement page

    Learn More

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    Ferman, John, DTM presents

    Free Webinars: “EDS Support Groups”

      Presenter: John Ferman   Click here for a link to our web pages

    Learn More

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    Epps, Howard, MD presents

    Free Webinar: “Orthopedic Considerations in EDS”

      Presenter:  Howard R. Epps, MD Click here for a link  to the announcement page

    Learn More

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    Dommerholt, Jan, DPT presents

    Free Webinar: “Physical Therapy for Ehlers-Danlos”

    PRESENTER:   Dr. Jan Dommerholt   Click here for a link to the announcement page

    Learn More

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    Burkholder, Henry, MD presents

    Free Webinar: “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”

    Presenter: Dr. Henry Burkholder Click here for a link to the announcement page

    Learn More

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    Byers, Peter, MD presents

    Free Webinar: “Vascular Ehlers-Danlos Syndrome / EDS type IV”

    PRESENTER:   Dr. Peter Byers Click here for a link to the announcement page

    Learn More

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    Das, Subinoy, MD presents

    Free Webinar: “Sinus Care for Ehlers-Danlos Syndrome”

    PRESENTER:   Subinoy Das, MD, FACS, FARS  Click here for a link to the announcement page

    Learn More

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    Gargano, Frank, DPT presents

    Free Webinar: “Dry Needling for EDS”

    PRESENTER:   Frank Gargano PT, DPT, OCS, CIDN, MCTA, CWT Click here for a link to the announcement page

    Learn More

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    Lebron, Diana, MD presents

    Free Webinar: “Headaches and Ehlers-Danlos Syndrome”

    PRESENTER: Diana Lebron, MD     Click here for a link to the announcement page

    Learn More

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    Dhar, Shweta, MD presents

    Free Webinar: “Coordination of Care in Adults with EDS”

    PRESENTER: Shweta Dhar, MD, MS, FACMG Click here for a link to the announcement page

    Learn More

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    Kane, Kathleen, ESQ presents

    Free Webinar: “Social Security Disability Application Process”

    Presenter: Kathleen Kane, ESQ   Click here for a link to the announcement page

    Learn More

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    Barnum, Richard, MD presents

    Free Webinar: “EDS and Psychiatric Illness Misdiagnoses”

        Presenter Dr. Richard Barnum   Click here for a link to the announcement page

    Learn More

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    Maitland, Anne, MD presents

    Free Webinar: “Mast Cell Activation Syndrome” Part 1

    PRESENTER:  Dr. Anne Maitland Click here or a link to the announcement page

    Learn More

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    Pocinki, Alan, MD presents

    Free Webinar: “Chronic Pain, Poor Sleep, Depression, and Fatigue in EDS”

    Presenter: Alan Pocinki, MD   Click here for a link to the announcement page

    Learn More

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    Neilson, Derek, MD presents

    Free Webinar: “EDS – Hypermobility Type”

    Presenter: Derek Neilson, MD Click  here for a link to the announcement page

    Learn More

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    Rowe, Peter, MD presents

    Free Webinar: “Managing Orthostatic Intolerance in EDS”

    Presenter: Dr. Peter Rowe   Click here for a link to the announcement page

    Learn More

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    Lamoure, Joel, RPh presents

    Free Webinar: “Medical Psychiatry in Pain Management”

    Presenter: Professor Joel Lamoure, RPh  Click here for a link to the announcement page

    Learn More

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    Palmer, Eric, BOCO presents

    Free Webinar: “Bracing for EDS”

    Presenter: Eric Palmer,  Orthotist Click here for a link to the announcement page

    Learn More

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    Mitakides, John, DDS presents

    Free Webinar: “TMJ, Cervical Instability and EDS”

    Presenter: Dr. John Mitakides Click here for a link to the announcement page

    Learn More

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    Kallish, Staci, MD presents

    Free Webinar: “Cardiac Manifestations in EDS”

        Presenter: Dr. Staci Kallish Click here for a link to the announce page  

    Learn More

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    Chopra, Pradeep, MD presents

    Free Webinar: “EDS and Pain… Connecting the Dots” Part 2

      Presenter: Pradeep Chopra, MD Click here for a link to the announcement page

    Learn More

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    Wilson, Golder, MD presents

    Free Webinar: “EDS Spectrum and Dysautonomia”

        Presenter: Dr. Golder Wilson Click here for a link to the announcement page Video link is on this page

    Learn More

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    Muldowney, Kevin, MPT presents

    Free Webinar: “SI Joint (Hip) Dysfunction”

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

    Learn More

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    Chopra, Pradeep, MD presents

    Free Webinar: EDS Pain Management. (Part 1)

    Presenter: Dr. Pradeep Chopra Click here for a link to the announcement page Video link is on this page

    Learn More

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    Healy, Michael,DPT presents

    Free Webinar: “A Manual Physical Therapy Approach”

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

    Learn More

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    Smith, Ellen Lenox presents

    Free Webinar: “Taking Control of Life With EDS”

    Presenter: Ellen Lenox Smith Click here for a link to the announcement page.  Video link is on this page

    Learn More

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    Goldschneider, Ken, MD presents

    Free Webinar: “Pain Management for EDS”

        Presenter: Ken Goldschneider,  MD Click here for a link to the announcement page Video link is on this page

    Learn More

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    Mentesana, Carl, DDS presents

    Free Webinar: “EDS: A Dental Perspective“

        Presenter:  Carl Mentesana, DDS Click here for a link to the announcement page  Video link is on this...

    Learn More

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    Gandomi, Stephanie, MS presents

    Free Webinar: “The Evolution of Genetic Diagnosis and Why This Matters “

    Presenter: Stephanie Gandomi, MS Click here for a link to the announcement page. Video link is on this page

    Learn More

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    Holick, Michael, MD presents

    Free Webinar: “Nutrition and Vitamin D”

      Presenter: Michael Holick, MD Click here for a link to the announcement page. Video link is on this page

    Learn More

Directory of Local Support Groups

We help EDSers find or organize support groups in their local communities. Our free program provides each group with a listing on the Support Group Directory and Map, free webpages, coaching, and more… If there is no group in your area, we will help you survey interest and connect with local EDSers. Contact us at info@edsawareness.com for help or to be included in the directory.

Find a support group location by using the interactive map or the look-up menu below.

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Recent Articles

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Presentation & Round Table Discussion with children with EDS

Posted on September 21, 2016

Thank you all for taking the time to come to UIC College of Medicine on 9/21/2016 to let us learn about EDS. We all really enjoyed the talk and learned how to diagnose this collagen disorder! We met children with Ehlers-Danlos-Syndrome to hear their stories. Members of the EDS Chicago Support and Awareness group presented […]

Read More

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Nursing Management of Patients with Ehlers–Danlos Syndrome

Posted on September 19, 2016

By Linda K. Anderson, BSN 38 AJN ▼ July 2015 ▼ Vol. 115, No. 7 ajnonline.com CE 2.5 Ehlers–Danlos syndrome (EDS) refers to a group of hereditary connective tissue disorders which together affect an estimated one in 5,000 persons worldwide.1 The condition is likely underdiagnosed because of a lack of familiarity with its various manifestations and a […]

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Ehlers-Danlos and Chiari at the Olympics in RIO

Posted on August 29, 2016

By RDR Staff  . . .  Allysa is known for her competitiveness, determination and breaking barriers mindset. In 2015, she became the paratriathlete world champion, now she will be heading to Rio for the 2016 Paralympics to try and further her success as a paratriathlete. . . . . Diagnosis   In 2010, Allysa was diagnosed […]

Read More

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Free Webinar – “Results of the EDS Awareness World-Wide Survey” – RECORDING AVAILABLE

Posted on August 29, 2016

Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com  TOPIC: Results of the EDS Awareness World-Wide Survey PRESENTERS: John Ferman and Deanna Hamm John Ferman and Deanna Hamm (father and daughter) are co-founders of the EDS Awareness Program. There were 2544 respondents to this World-Wide survey from 26 countries. The specific results were presented and discussed during […]

Read More

More Articles

Testimonials

  • I want to thank you both. John, I remember you from the EDS Conference in Northern Kentucky.  You were starting up the EDS Awareness.com program then. Seemed very sad still from losing your wife, explained her story to my daughter and I.  Very sorry.  I still have the business card.

    I hope things are better.  My only child has EDS, then got Lyme. Can’t figure out if EDS could be this bad. I keep trying to find time to view the seminars online.

    I just appreciate both your efforts.  As I try to keep my daughter and I both wanting to live, trying to find help, I know there are good docs, just not here.

    God bless you both from the EDS community.   Sincerely, Rebecca

    - Rebecca – From 2012 Conference

  • Thank you so much for getting a presenter on the topic of pharmacogenetic testing. I hope that many medical providers get to see this as well.
    I am so grateful for the wonderful webinars you produce.  You are wonderful.

    - Maria in Chicago

  • Thank you so much for all you do to help so many EDSers!  We appreciate the webinars and information EDS Awareness provides and will happily provide it to the MetroDCArea support group.

    - Christina H. in DC

  • Dr Pocinki’s webinar has given me HOPE! and the next webinar ties right in with everything I have gone through, so I just wanted to say a special thank you for putting these webinars out there for those of us in search of answers.

    I hope and pray I can bring these answers back to my Psychiatrist at Tuft’s and my other Physicians, especially if I I’m successful in getting relief from my symptoms, and help to raise awareness of EDS & POTS to help others.

    You & your Team are a blessing – please keep up the good work for us Zebras! I really appreciate all of your efforts. God bless you!

    - Leah from MA

  • Deanna,
    My daughter LOVED meeting you!!!  She talked about how much she appreciated having someone who understands how she feels to talk to.  In fact, she talked about how grateful she was to meet you almost the whole way home!!  It was so nice to finally see HOPE in her eyes and not fear.

    I cannot thank you all enough.  Honestly, if it weren’t for you and your dad, can you imagine where so many of us would be right now?  That is a terrifying thought to me.  3 months ago, I couldn’t imagine that there was a soul on the planet who she could identify with.  You are simply a gift from God.  Thank you doesn’t really seem like enough!!!

    - Kathy C. in Cleveland, OH

Upcoming Events

Ehlers-Danlos Hoofbeat Run Walk-N-Roll will include a 1 mile run/walk/roll, a 5K run/walk and a ½ marathon run happening on August 6, 2016 in King Ferry, NY.

August 6, 2016

7:30 am

Ehlers-Danlos Hoofbeat Run Walk-N-Roll will include a 1 mile...Read more...

See all upcoming events

Current Poll

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