Ehlers-Danlos Oklahoma local group raises awareness at the State Capitol

Posted May 14, 2017

Oklahoma local group EDSOK had a successful event spreading awareness about the Ehlers-Danlos syndromes and related disorders during May Awareness Month at the Oklahoma State Capitol. This is the fifth year EDSOK has lobbied at the Oklahoma State Capitol for Ehlers-Danlos awareness. The original resolution was written in 2013 for the Oklahoma House for Representatives by EDSOK group member Rochelle McLemore and Representative Ed Cannaday to officially declare May as Ehlers-Danlos Awareness Month in the state of Oklahoma. The resolution must be reauthorized every year.

The group’s two-day awareness event began on Monday with a table set up in the Capitol rotunda. Group members passed out brochures and talking to people about the Ehlers-Danlos syndromes and related disorders. EDSOK members were able to speak one on one with several State Representatives, staffers, Capitol visitors, and Governor Mary Fallon. Group Co-Leader and Ehlers-Danlos Society Program Manager Jessica Adelman also had an unplanned opportunity to spread awareness to a wider audience when she was approached by a reporter from Telemundo Oklahoma City for an interview about the Ehlers-Danlos syndromes.

“I think we had a very successful day,” said Jessica. “A lot of visitors were interested in talking to us about our experiences with Ehlers-Danlos syndromes. I couldn’t be more proud of my group for organizing and executing this event. The Telemundo interview was a surprise. When they dubbed me in Spanish, they mistranslated a few things and got some of the details wrong, but they helped us get the word out to an audience that we may not have been able to reach otherwise, so I count that as a success.”

On Wednesday, Representative Emily Virgin sponsored the resolution reauthorizing May as Ehlers-Danlos Awareness Month in Oklahoma. After the resolution was adopted, EDSOK Co-Leaders Cortney Toumayan and Jessica Adelman had the opportunity to speak to the members of the Oklahoma House of Representatives about the Ehlers-Danlos syndromes.

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