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The Two Best Things About Advocacy Day

Mar 25

Posted by: ACHA
3/25/2013 10:58 AM  RssIcon

By Jon Ritchings, Jr.

A week ago we had Advocacy Day in Washington, D.C. This was my first time at this event and it definitely will not be my last. Two things really struck me about this annual event.

The first was being able to sit down with our representatives or their staff and tell our 30-second stories. It amazed me that as I spoke, you could see things click in their heads as they absorbed. Here it is, my 30-second story that I used:

My name is Jon Ritchings, I'm 41, I live in Storrs, Conn., and I have a CHD. In my lifetime I have had more than 30 procedures done on my heart and the surrounding vessels. Three of those were open heart surgeries and my last open heart was this past summer. There are people out there going through the same things I've gone through. More importantly, for every adult who needs this care there are many more who may need it and aren't getting it. For that reason we are asking...

Everyone I spoke to was on board with the things we were asking and the whole day was very positive. It truly made me feel like I was able to make a difference, and that is an amazing feeling.

The second best thing was being able to meet and speak with other CHD individuals face-to-face in a group setting. These are people that I have known on Facebook or through ACHA for years but had never met—along with some people I had never known. If you have a CHD, especially if you are around my age, you know what it's like to feel alone, like you’re the only person who's had a heart condition from birth. Being in that group of people, all of whom are warm and friendly, makes you feel like you belong. You feel that you are part of a group of amazing people—because you are.

For me, I think Advocacy Day may be the highlight of my year. I will certainly be taking more time next year so that I can hang out with an incredible group of people a little longer and I will be going back to reaffirm with my reps that this is still important. I hope I will see you there.

Jon Ritchings, Jr., is a 41-year-old father who was born with pulmonary atresia and hypoplastic right heart syndrome. Although he has made a career in retail, he prefers to be outdoors kayaking and taking photos. Jon likes to draw inspiration from quotes and one of his current favorites is from Lao Tzu: “I have just three things to teach: simplicity, patience, compassion. These three are your greatest treasures.”

Copyright ©2013 ACHA

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