Archive for the ‘Chiari’ Category

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New Cervical Spine Instability Publication: The Authors Explain Their Findings

Posted on March 27, 2023

For Chronic Pain Partners Newsletter, writer Christie Cox speaks with two pioneers in the Ehlers-Danlos community Leslie Russek and Susan Chalela, about their recent publication on upper cervical instability (UCI). Leslie Russek is a DPT, PhD, and Professor Emeritus of Physical Therapy at Clarkson University and an Orthopedic Certified Specialist Physical Therapist with over 30 […]

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Surgery Prep: Meeting Your EDS Hospital Stay Needs

Posted on February 22, 2023

How to be prepared & stay safe when having a hospital stay with Ehlers-Danlos syndrome (EDS) This article will give an overview of ways you can prepare for a hospital stay when you have EDS, as well as tips on surgical prep and your own patient advocacy. People with Ehlers-Danlos syndrome (EDS) often need surgery […]

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What it’s Like to Live with a Serious Invisible Illness Like EDS

Posted on July 15, 2018

by:  ALICE HOWARTH From searching for a cure to being repeatedly dismissed, former model Tori Chalmers opens up about being part of the invisible illness community. Tori Chalmers  ES Lifestyle Newsletter Having any kind of illness is tough but add to that the fact of it being invisible, at times it can seem impossible to cope with. In the […]

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CSF – Unite@thehill – June 23-25, 2018

Posted on April 11, 2018

For the past few years, CSF has stormed Capitol Hill with you to make a difference for people living with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and many other related disorders… and it seems like Congress is really listening. I n February 2015, Congress voted to increase the NIH budget by $31.3 billion to support more biomedical research. In 2016, […]

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Dayton Zebras Conquer Ehlers-Danlos, Chiari Walk Across America 5K

Posted on October 1, 2016

        On September 17, 2016 the Dayton Zebras participated in the Conquer Chiari Walk Across America 5K in Beavercreek, OH. This year the Dayton Zebras set up a selfie booth and EDS awareness table. We reached many people that had never heard of EDS. We were also able to reach people that did […]

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Free Webinar – “Chiari Malformation in EDS” – Recording Available

Posted on March 1, 2016

Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com     TOPIC: “Chiari Malformation in EDS” PRESENTER: Dr. Holly Gilmer   Click IMAGE for a link to the recording Click here for a link to the presenter’s slides     INVITE YOUR FRIENDS: Spread the knowledge!  Please post this announcement on Facebook, and forward this invitation to others who […]

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Free Webinar – “Tethered Cord Syndrome in Ehlers-Danlos” – Recording Available

Posted on January 5, 2016

Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com TOPIC: “Tethered Cord Syndrome in Ehlers-Danlos” PRESENTER: Petra Klinge, MD, PhD Click IMAGE  for a link to this recording Click here for a link to the presenter’s slides INVITE YOUR FRIENDS: Spread the knowledge!  Please post this announcement on Facebook, and forward this invitation to others who may […]

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