Archive for the ‘Awareness’ Category

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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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Mandy Harvey’s Performance in Warren Ohio

Posted on April 10, 2018

We were excited to attend Mandy Harvey’s performance in Warren, Ohio She was interviewed and described her struggles with Ehlers-Danlos Syndromes. Click here for a link to the recording of her performance. She was introduced around the 18 minute time mark. Click here for more about Mandy Harvey

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W Virginia Tri-state EDS support group promoting EDS Awareness Month 

Posted on April 3, 2018

Tri-state EDS support group members were interviewed to discuss EDS Awareness Month Ashton Nesmith-Kochera is with Victoria Graham and 8 others By: Jonathan Hunter Updated: May 17, 2018 11:18 PM EDT Click here for the link to the video of this interview   MARTINSBURG, W.Va. – The month of May is Ehlers-Danlos Syndrome Awareness month. EDS is an inherited condition that affects […]

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Many Ehlers- Danlos Patients Cannot go Numb at the Dentists

Posted on April 1, 2018

By Chris Baraniuk Some people are resistant to local anaesthetic, meaning they must endure dental and medical procedures without such pain relief. And we’re only beginning to understand why. To Lori Lemon, the doctors all seemed flabbergasted. She had come in to the Mayo Clinic in Jacksonville, Florida, to have a lipoma – a growth […]

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The Truth is that I will Always be Tired. It’s Part of my EDS.

Posted on March 20, 2018

Tiffany wakes up exhausted with her Ehlers-Danlos Syndrome issues. Life with Ehlers Danlos: Surviving Exhaustion While Still “Adulting” By Tiffany Early I’m tired. That’s not exactly a news flash. I’m forever and always tired. One thing that I have in common with the majority of the chronic illness and rare disease community is my chronic […]

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Mandy Harvey Discusses her Struggles with Ehlers-Danlos Syndromes

Posted on February 24, 2018

By Natalie Angley, CNN Mandy Harvey takes people on a journey when she sings. “The thing I love about music … you can close your eyes and be transported back to a memory or a dream or a feeling,” the 30-year-old said. Harvey has near-perfect pitch, so it’s hard to believe she is deaf. “I was […]

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Being different doesn’t mean that you’re alone with EDS

Posted on February 21, 2018

No More Monkey Bars: A 13-Year-Old’s Journey With A Rare Genetic Condition by Isabella ‘Kitty’ Yim An email from Louis DeLauro, a middle school teacher at the Grey Nun Academy in Yardley, Pennsylvania. He wrote: “Isabella Yim is 13 years old and is a star in my Language Arts Classroom. All of us found her […]

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