By Kelly DiMaggio
1 Sep

Walking to Fight Congenital Heart Disease

Thursday, September 01, 2016

This past April, I was fortunate enough to participate in my first Congenital Heart Walk. When reflecting back on my first walk experience, one of the things that strikes me the most is how these walks are really growing and really coming into their own. The congenital heart disease (CHD) community, and even more so the adult congenital heart disease (ACHD) community, is a rather unique group. CHD’s are the most common birth defect, with one in 100 children being born with some form of CHD; yet they are still grossly underfunded and under advocated for. I think it’s so wonderful that the Adult Congenital Heart Association (ACHA) and The Children’s Heart Foundation partner up to put on such a great event!

From start to finish, the process of registering for and participating in a Congenital Heart Walk is a very smooth process. Walkers are given the option to register as an individual or as part of a team, and the participant center homepage is very easy to use. Plus, registrants are provided with all sorts of templates to use to draft emails or correspondence to recruit walkers, solicit donations, update about your progress and send thank you letters. Each walk has one large fundraising goal they aim to meet, and I am so proud to say the Washington, DC area walk surpassed the fundraising goal of $100,000.00 and raised $108,905.79!

The walk itself is quite fun - with a great array of vendors sponsoring the event. Before everything really got going there were lots of teams and individuals enjoying breakfast together and it was really quite powerful to see just how strong the congenital heart community and the adult congenital heart community are. The DJ was upbeat and engaging, taking the time to recognize the highest fundraising individuals or teams. My cardiologist started a support group for all of her adult congenital patients, and the majority of our support group registered and walked on our team. My husband and I were lucky enough to get to captain our walk, and we were rewarded with wonderful success. We had nearly 100 people register to walk on the team and raised over $8,000.00

At the end of the day though, it’s not about how many people attended or how much money was raised (don’t get me wrong, those are great and very important too!) but rather, how you are left feeling during, and after, the event. At this year’s walk my husband, my father, my mother-in-law, two of my sisters-in-law, three of my nephews, two coworkers and two of our best friends joined us. It was at least a forty minute drive and started quite early on a Saturday morning; yet they all came to walk with us without giving it a second thought. Those are the types of people that you really want in your life, and a community walk like this really highlights those special people in your life.

I was unable to attend the 2015 Washington, DC Congenital Heart Walk as I was away that weekend with girlfriends celebrating one of my closet friend’s bachelorette weekends. My wonderful husband went for the both of us and decided to do so on a whim. When he found out a mere 48 hours before the walk that he was able to get off of work, he went full speed ahead at tackling the walk. He raised just over $3,000 last year, and walked completely by himself. As I mentioned, this year, my husband and I were the captains of our walk and were met with great participation and success. I can honestly say that being involved in the Congenital Heart Walk efforts the past two years really served as a huge catalyst for the expansion of our advocacy efforts and goals.

Although for me my area walk has come and gone, I know there are still many Congenital Heart Walks coming up this fall. I encourage everyone to check and see when and where your area walk is being held and to participate or just volunteer! I promise you’ll really enjoy the event and be amazed at all you can do to help advocate and educate. 



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