Archive for the ‘Parenting’ Category

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10-year-old Boy with Ehlers Danlos Inspires Hospital Staff

Posted on August 30, 2014

Toby Skerman has been promoting EDS Awareness in the UK.  This 10-year-old boy who is a patient at Great Ormond Street Hospital has inspired staff to raise funds for his wheelchair. By: Mid Sussex Times Toby Skerman, of Uckfield, has inspired staff at the Nuffield Hospital to raise enough funds to buy him the Beach Hippocampe wheelchair […]

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How to Help Your Ehlers-Danlos Caregiver

Posted on August 16, 2014

Caregivers are the unsung heroes in the life of the chronically ill.  They offer critical support for patients living with Ehlers Danlos Syndrome.  Learn 7 practical ways you can appreciate your caregiver and help them manage their additional responsibilities.  by Toni Bernhard, J.D.  I know how fortunate I am to have a loving caregiver. Although he may not see it this way, […]

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Annabelle’s Family Runs for Vascular Ehlers-Danlos Syndrome Awareness

Posted on August 14, 2014

 Many friends and volunteers made it a special day for Annabelle as she participated in the Manchester UK Color Run.  The Griffin family spearheads ongoing campaigns to fundraise and spread awareness for Vascular Ehlers-Danlos Syndrome in the UK.  COLOURFUL fundraisers painted the town not just red, but every shade possible, when they took part in “the world’s happiest […]

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“EDS Awareness Educational Series” Webinar – Recording Available

Posted on August 12, 2014

  EDS Awareness invites you to listen to a FREE online learning session! On August 6, Dr. Derek Neilson’s presented EDS Hypermobility Type and what is needed to change the perception of this condition.       Sponsored by www.bodysupportstore.com    WHAT:  ““EDS Awareness Educational Series” – a webinar program hosted by EDSawareness.com   PRESENTER:   Dr. Derek Neilson – Assistant  Professor […]

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11-year-old with Ehlers Danlos Syndrome Needs Accessible Van & Bath

Posted on August 8, 2014

This Ontario community has rallied to help support and raise funds for the Hennessy family. Zoe, 11, has EDS and needs an accessible van to help her travel to appointments with less hazard for herself and her family.  They are closing in on this goal and are also working towards funding a bathroom renovation so that Zoe can be independent […]

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Carrie is Honored for Ehlers-Danlos Caregiving

Posted on August 5, 2014

EDS caregiver, Carrie Brazier, has been nominated for an award recognizing positive role models – the “Young People of the Year” (YOPEY) award.  “She is very selfless and puts everybody else first. If she was not here I could not function,” says her proud EDS mom. By Victoria West. “A carer who has helped raise money for […]

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TV Character with Ehlers Danlos Syndrome becoming a Mother on Coronation Street

Posted on July 28, 2014

“Coronation Street” is a important TV program for EDS awareness in the UK. A new storyline depicts the character “Izzy” as a newly-pregnant woman with Ehlers Danlos Syndrome.  This will help the public understand EDS issues that may be encountered during pregnancy. Gary Windass is now over the moon at the prospect of becoming a father on Coronation Street. And life is pretty […]

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Award-winning mom’s photo represents “staying positive” despite Ehlers Danlos Syndrome

Posted on July 9, 2014

 Wendy Pitts is an artist who stays positive while juggling 4 kids,  a business and Ehlers-Danlos Syndrome. INSPIRING residents living with long-term conditions and disabilities have been showing off their works of art after winning a competition to tell their story through a picture. Organised by Warrington CCG, judges from the health board’s quality committee had the difficult […]

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