Archive for the ‘Kids’ Category

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Ehlers Danlos Syndrome Featured in TV News Story – Watch Video

Posted on September 5, 2014

Megan is a talented artist with Hypermobile EDS. Watch her video story featured on a Philadelphia TV news station.  This is a good example of how patients can spread awareness of Ehlers Danlos Syndrome in their local communities. Watch the video EDS Awareness Notes:  In media reports, there tend to be some  inaccuracies or misleading statements. We wanted to […]

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Maddison Parker to Meet Australian Prime Minister to Discuss Ehlers Danlos Syndrome Research

Posted on September 2, 2014

Maddison Parker is looking forward to having five minutes with Australian Prime Minister Tony Abbott to talk about Ehlers-Danlos Syndrome. Her persistence seems to be paying off – she is awaiting a date and time to be confirmed for the meeting. “MADDISON  Parker is one step closer to getting five minutes with Prime Minister Tony Abbott. […]

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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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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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Ehlers-Danlos Mom Makes Tough Decision For Third Child

Posted on July 7, 2014

Veronica Foale says Ehlers-Danlos Syndrome has not stopped her from having a good quality-of-life.   By Fred Hooper. When Veronica Foale was diagnosed with a genetic disorder she was also told there was a 50 per cent chance she would pass this condition on to her children. She already had two children when she found […]

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Skydivers Fundraise for Toddler with Ehlers Danlos Syndrome

Posted on July 5, 2014

 On July 5th, supporters of this 3-year-old EDSer jumped at the chance to raise money for his medical equipment. Eleven people, including his mother, actually jumped from a plane! Skydivers are raising money for a toddler with two serious medical conditions. Fundraisers from Burnham and South Woodham are preparing to jump from a plane on Saturday […]

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Music Therapy Helps 11-year-old Battle Ehlers-Danlos and Chiari Malformation

Posted on July 3, 2014

The OPUS hospital music program helps James cope with Ehlers-Danlos pain. In addition, a recent study showed 29% lower anxiety levels and a lower average breathing rate in patients who were played music during their operations. Click here  to watch videos demonstrating how the OPUS music therapy program is helping patients. By Dan Russell,  Nottingham Post. “MUSIC is helping an 11-year-old boy […]

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180 Guests Enjoy Ball with Annabelle Griffin & Ehlers Danlos Support UK

Posted on June 30, 2014

Annabelle’s charity continues to garner support and raise awareness of Ehlers-Danlos Syndrome (EDS). By Saiqa Chaudhari.   “A GLITTERING ball saw 180 guests raise more than £3,000 for a charity which aims to “make the invisible visible”. Brandlesholme charity Annabelle’s Challenge hosted the glamorous event at The Village Hotel in Bury in aid of national organisation EDS UK. The […]

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