Making CHD Week Official

Each year we celebrate CHD Week in hopes that we as a community can move the needle forward on understanding, support, and resources for all those impacted by Congenital Heart Disease. Conquering CHD volunteers from across the country work to make sure CHD is publicly recognized in February (and year round!), one way is through state and local proclamations. Below, two of our state chapters share how impactful these proclamations can be and tips so you too can acquire a proclamation in your area next year to help spread the CHD word!

Conquering CHD – Colorado

Before I was a heart mom I never knew that a proclamation letter was a real thing. I thought they were only something you read about in books about kings and queens who were trying to protect the princess from an evil witch. 

In all seriousness, a proclamation is defined as a public or official announcement, especially dealing with a matter of great importance. Congenital heart defects affect 1 in 100 births so I think it’s fair to say it’s of great importance. Getting a proclamation letter isn’t as daunting as it may seem. You can find the steps on your state’s website and search for proclamation requests and if approved they are good for a year. The requirements may vary from state to state so be sure to plan ahead. 

A proclamation can serve as a beacon of hope for a family navigating a new diagnosis, provide a small ounce of comfort to someone grieving the loss of their loved one and help patients of any age feel seen and not alone.  Imagine the impact if all 50 states had proclamations for CHD week in February? We not only provide hope for CHD patients and their families. We create visibility on a larger scale for anyone who may not know what a congenital heart defect is. 

Conquering CHD- Colorado got the first proclamation in February of 2020 so we didn’t get to do a little ceremony or get a photo op in the governor’s office but I do hope we get to one day. We did send a couple of copies to our friends at the children’s hospital so they could celebrate with us. 

In the book I write one day, CHD will be the evil witch. The disease that would take my baby girl from us far too soon. I may not ever be able to rewrite her story so that she can stay with us, but I can write a couple sentences to my governor’s office so that they know she is more than a statistic. To show my fellow bereaved mothers they are seen and heard.

Conquering CHD – Oklahoma

Proclamations are all about one thing. Awareness. Can we all agree that congenital heart disease needs awareness? 

Awareness is the key to many of the challenges facing congenital heart disease. The more people who know about the struggles people with CHD go through, the more pressure there is for our communities to provide the resources people with CHD need. We need our legislators to provide funding so they can see better outcomes for their defects. We need more transparency so that families can make the most informed medical decisions they can for their loved ones. 

Getting the proclamation in Oklahoma was simple, it started with a google search, our proclamations go through a form on the Governor’s website. We filled out a form on their website and received an email that our state proclamation was ready!

Local proclamations were a little more labor-intensive, but just as important, for those, we sent an email to the mayors of our major local towns, often, we’d receive an email back letting us know to pick those up from city halls. 

Finding someone to read the proclamation at the state level was easy. We set up a zoom meeting (thanks COVID) and Marilyn Stark, my local representative read the proclamations after a short speech on the importance of research and Conquering CHD.

Everything was very straightforward and simple, but it meant the world to know that people who aren’t directly affected by CHD cared about the struggles that our family had experienced.

Heather is a wife and mom of four. Her youngest daughter Madi was born with HLHS in 2017. Madi passed away after a 41 day battle with congenital heart disease. Heather is passionate about normalizing grief and talking about mental health.

Elizabeth Epely-Sanders is an author, wife, and mom. She lives in Oklahoma City, with her husband Adrian, and two daughters Aurora, and heart warrior, Abigail. Liz earned her Bachelor of the Arts from the University of Oklahoma and is passionate about helping people and raising awareness for congenital heart disease.

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