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The Community of Advocacy

Mar 11

Posted by: ACHA
3/11/2014 1:30 PM  RssIcon

By Kim Edgren

What an amazing trip to Washington, D.C., in late February to advocate on behalf of all affected by CHD! As the lone Massachusetts rep, I was joined by ACHA’s own Terri! It was a treat to spend the day with her and the other ACHA folks as they took action. It is a true testament to the dedication of those behind the doings of ACHA. From start to finish it was a great experience that had tremendous impact on the decision makers of D.C.

As my fellow blogger and advocate Michael so eloquently described in his post, The One-Two Punch, we had some specific “asks” of our representatives and senators: Support CHD surveillance by appropriating $7 million to the CDC, continue to fund NIH research, and for our representatives, to join our Congenital Heart Caucus. Those are the facts – the impact comes with the stories.

This was my second trip to Advocacy Day and it is the stories that always amaze me. It is not easy to leave your daily life, find the money to get there, and physically take on the vast job of getting from one place to another in the sprawling complex of buildings that house our lawmakers.

But more than 50 folks did it.

Patients, like myself, had their own battle stories to share (and scars to prove them). Parents and spouses, whose battle wounds are not visible but cut just as deep, lent their voice of endurance and caring through much uncertainty and hardships. The medical professionals, who have made congenital heart disease their life’s work, were there to articulate the medical necessity of research and tracking patients. And finally, the good folks of ACHA – some with personal connections to CHD and some without – are still working hard for our community and sharing the experience of giving a voice to all of us fighting the fight.

In a world where so much connecting and communicating is done online, it was fabulous to spend the day with Terri and all the people who work hard for our CHD community! Working together and sharing our stories in person with those in a position to bring about change is the perfect way to enforce the mission of ACHA and help the millions affected by CHD. Can’t wait for next year!

Kim Edgren was born in 1966 with transposition of the great arteries, pulmonary stenosis and ventricular septal defect. She recently became the proud owner of a Melody valve! When she is not trying her hand at writing she is busy spending time with her partner and three girls, managing her two child care centers and planning her next vacation.

Copyright ©2014 ACHA

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