1/29/2014 1:49 PM
By Kim Edgren
I had another post all set to go today but after watching the State of the Union address last night I changed my mind. I promise—no politics! It made me think about resilience, community and commitments made, which led me to think about ACHA…. Well, OK, maybe that is my short attention span! But seriously, the months ahead are full of opportunities for our CHD community to make commitments, show our resilience and be heard. How, you ask?
Advocacy Day! It is right around the corner and a vital event in making our collective voices heard to the power makers. So much has been accomplished through the hard work of patients, families, and medical professionals to help advance initiatives that directly affect our needs through funding, surveillance and especially the formation of the Congressional Congenital Heart Caucus! Having attended an Advocacy Day on the Hill, I can tell you in addition to the important work done with your Senators and Representatives, you will be uplifted by the stories of those who will join you. To see the dedication and passion of others in support of CHD is worth the trip in itself.
Congenital Heart Walks! Yes, even as we freeze throughout most of the country, the walks are being planned for this spring and fall. Nationwide, the walks have raised more than $1 million for research, advocacy and in support of those affected by CHD! WOW! At our Boston Congenital Heart Walk last year we had almost 400 people attend. To see all of those people, young and old, come together for a fun-filled event in support of our community is amazing! If you can, find a walk near you and join in! Create a virtual walk in support of one you can’t attend… we need you! As these walks grow—and they will—we will help others see that CHD is worth fighting and raising money for. As the number one birth defect in the United States, we need to help get the word out and continue to raise vital funds for research and advocacy. Congenital Heart Walks do just that!
Finally, ACHA’s 7th National Conference! This fall in Chicago our CHD community will come together to learn, meet each other, and see the inspiration our entire community – patients, families, doctors, friends – displays every day as they live with, work for and support us. I have attended two of these conferences and I will do everything I can going forward to not miss a one! Because of them, I have made a commitment to do what I can for my CHD community and make sure my fellow CHDers have access, resources and support as they fight this lifelong battle. If you can, come to the conference. You will not regret it for a second. Between the educational tracks for patients, families and professionals given by the leaders fighting for CHD, and the hundreds of other CHD survivors you will meet along with their families and friends that support them, you will leave feeling inspired and hopeful for our future and the future of the growing adult CHD community.
So, let’s get busy! Hope to see you soon!
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.
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