Archive for the ‘Chiari’ Category

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Ontario Family Fights for Province to Pay for Ehlers Danlos Surgery

Posted on September 29, 2014

Erika received major funding for her needed surgery. It came from the generosity of her community. Should this money have come from Ontario’s public health insurance?  By Susan Gamble.   Two years ago, the community did what the Ontario government refused to do and raised $100,000 so a St. George, Ont., teen could get potentially life-saving surgery […]

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Jessica Participates in the first “Conquer Chiari Walk Across America”

Posted on September 19, 2014

Jessica Paddack has endured many surgeries throughout her 15 year battle with Chiari malformation. One of her Chiari surgeries led to the discovery of her Ehlers-Danlos Syndrome. The “Conquer Chiari Walk Across America” is this Saturday. By: RENE RAY DE LA CRUZ. The walk will be one of many across the country designed to raise funds for research, education and awareness programs. […]

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Haley Rises Above Ehlers-Danlos Syndrome, Meets Tim Tebow

Posted on August 3, 2014

Haley’s wish will come true as she spends personal one-on-one time with her role model, Tim Tebow! Tim Tebow Foundation’s “Wish 15” program (W15H) reaches out to kids with life-threatening illnesses whose wish is to meet Tim Tebow.  As we kick off our W15H season, we are excited to partner with the Fairmont Scottsdale Princess Resort for a […]

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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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2nd Annual Chiari Walk

Posted on June 27, 2014

The 2nd Annual Chiari Syringomyelia Foundation “Unite@Night” Walk was held June 27, 2014 in Charlotte, NC. Most people who suffer from Chiari or syringomyelia will tell you: their conditions are not simple. Often, there exists a wide array of related disorders, including idiopathic intracranial hypertension (IIH), hydrocephalus, Ehlers-Danlos Syndrome (EDS), and dysautonomia, just to name a few. […]

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Evan is a Teen with EDS who “Lives Each day Making a Difference”.

Posted on April 22, 2014

This courageous young man wants to help others with rare and debilitating diseases like his. By Wesley Gardner. “Sitting on the floor of his living room, with family photographs checkering the light yellow walls and Manchester United v. Bayern Munich playing on a muted television behind him, 15-year-old Evan Mundine began to tell his story. He talked […]

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Free Mayfield Chiari Center Webinar – April 12, 2014

Posted on April 1, 2014

Chiari Webinar Series Join the Mayfield Chiari Center for a series of free 60-minute webinars addressing topics important to the Chiari community. Held every three months, these webinars offer practical advice for living well with Chiari and syringomyelia. We encourage support group leaders to build activities around our webinars to grow their own groups. April […]

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