Photograph courtesy of Michele L. Hopkins

MAY IS EDS AWARENESS MONTH

The Zebra Network Kicks Off Ehlers Danlos Awareness Month and Announces Introduction of H. Res. 335 in the U.S. House of Representatives

Released May 1, 2021

The Zebra Network is excited to announce U.S. Congressman Dutch Ruppersberger (D-MD) has introduced House Resolution 335, a congressional resolution to dedicate and recognize May as Ehlers Danlos Awareness Month!

It has been over a decade since a resolution specifically recognizing Ehlers Danlos Syndrome (EDS) has been introduced in Congress. “This legislation goes far beyond recognizing the disease itself, and validates those of us who have been suffering for the condition for so long,” says The Zebra Network founder, Victoria Graham. “It validates us, our condition, and sparks hope in a community who often feels forgotten. Life with EDS can be tough—each one of us faces similar but different challenges. This resolution is a monumental step towards a better future for medical zebras across the world.”

The Zebra Network is encouraging fellow zebras to share the news of H.Res. 335 far and wide. “Share it on social media, yell it from the rooftops, tell anyone who will listen!” says Graham, “Our voices matter and when we work together, the possibilities are endless.” Social media is a powerful tool. In recent months, pictures and videos displaying zebras with EDS have racked up hundreds, thousands, even millions of views. Sharing a post, tagging celebrities with EDS, and calling your Congressmen and Congresswomen are some of the many ways you can help make a difference.

Not sure how to contact your Members of Congress?

To find your U.S. Representative based on your congressional district, click here.

To find your U.S. Senators based on your state, click here.

You can also call the U.S. Capitol switchboard to be connected directly with their offices: (202) 224-3121

First posted on Instagram, The Zebra Network announced their #HearMyHoofbeats #SeeMyStripes movement to promote awareness and advocacy for EDS throughout the Month of May, EDS Awareness Month. In line with their mission “to increase awareness, education, advocacy, and support for patients with Ehlers Danlos Syndrome,” The Zebra Network will be hosting a series of challenges, prizes, giveaways, and sharing the stories of zebras impacted by EDS.

Their first challenge is to “share the exciting news of H. Res. 335 with your friends, family, doctors, and tag your favorite celebrities to tell them why it’s important to you. You can even call your Congressional Representatives to support the bill, too!” Each time you share, tag The Zebra Network (@TheZebraNetwork on Instagram and Facebook) and use the hashtags #HearMyHoofbeats #SeeMyStripes to be entered to win this week’s surprise prize. 

Be sure to follow @TheZebraNetwork on Instagram to participate and learn more about the #HearMyHoofbeats #SeeMyStripes Movement this May!

From all of us here at The Zebra Network, Happy Ehlers Danlos Awareness Month! Remember, changing lives starts with YOU!