Archive for the ‘Kids with Ehlers-Danlos’ Category

blog-post-thumbnail
Lucy’s Inspirational Video about Ehlers-Danlos Syndrome

Posted on July 20, 2014

We are tracking Lucy’s progress as an advocate for Ehlers Danlos Syndrome awareness in the UK. Lucy and her dog Molly won the “Friends for Life” award at Crufts. Watch her inspiring video which demonstrates her perseverance and positivity as she fights life-threatening symptoms. By Katie Mansfield. INSPIRATIONAL Lucy Watts has made a short film to […]

Read More

blog-post-thumbnail
Girl with Ehlers Danlos Syndrome Wins Beauty Pageant

Posted on July 19, 2014

Eleven-year-old Hayley continues to compete in beauty pageants despite her struggles with Ehlers Danlos Syndrome.  Hayley uses this as a platform for fundraising and to spread EDS awareness! It’s a family-orientated competition where entrants must take part in a community project – extra points are awarded to those raising money for charity and helping in the community. By Exeter Express & Echo […]

Read More

blog-post-thumbnail
Vote for EDSer Finalist in “Inspire a Future Scientist” Contest

Posted on July 13, 2014

Claire Seiler created a video for her 4-H contest. Supporters can vote once per day through Aug. 1st. This 16-year-old EDSer is interested in tissue engineering to find a way to engineer collagen. The winner of this contest will receive a $1,000 scholarship and trip to Washington D.C.  “Wood County 4-H’er Claire Seiler, an 10-year member of the Colorful Clovers 4-H […]

Read More

blog-post-thumbnail
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 […]

Read More

blog-post-thumbnail
8-year-old with Ehlers-Danlos named Honorary Ranger at Yosemite National Park

Posted on June 12, 2014

This was a dream-come-true for Gabriel, a Florida 8-year-old with Ehlers-Danlos Syndrome. “A boy with a debilitating disorder had his dream come true when he was officially named an honorary ranger at Yosemite National Park. Eight-year-old Gabriel Lavan-Ying, from Gainesville, Florida, has Ehlers-Danlos syndrome, a debilitating and incurable disorder affecting that causes overly flexible joints and […]

Read More

blog-post-thumbnail
Annabelle Inspires New National Charity in the UK

Posted on May 28, 2014

This 5 year old young lady is campaigning with her parents Sarah and Jared Griffin for EDS Awareness and Research funding. The UK has a new charity with a brave little girl from Bury at its heart. Five-year-old Annabelle ‘AJ’ Griffin suffers from Vascular Ehlers-Danlos Syndrome (VEDS), the most serious form of Ehlers-Danlos Syndrome (EDS). The […]

Read More

blog-post-thumbnail
Schoolgirl Raising Awareness of Ehlers-Danlos Syndrome

Posted on May 24, 2014

Many children and adults are doing activities in May to promote EDS Awareness. Written by JORDAN DAY A zebra themed day was held at Mepal and Witcham Primary School to raise money awareness for Ehlers Danlos Syndrome (EDS). Pupil Jess Johnson has the disorder and she is pictured with mum Donna. “A little girl who […]

Read More

blog-post-thumbnail
Maddison wins “Australian 2014 Victorian Young Achiever Award” for EDS Awareness

Posted on May 15, 2014

Australian sisters, Maddison and Kayla, raise awareness and fundraise during EDS Awareness Month and all  year long. “A year ago, Maddison Parker, left, launched a worldwide campaign to raise awareness of Ehlers Danlos syndrome, a debilitating syndrome that affects her and sister Kayla. Picture: Kylie Else  Source: News Limited MADDISON Parker has been recognised as one of […]

Read More

Get Webinar Announcements And Our FREE Guide

Support EDS Awareness

See all upcoming events

Current Poll

How long until you received a proper diagnosis for EDS?

View Results

Loading ... Loading ...