By Kelly DiMaggio
29 Apr

The Very First Walk for 1 in 100

Monday, April 29, 2019

The inaugural Walk for 1 in 100 series kicked off this past Saturday at Wheaton Park in Maryland, and was nothing short of a rousing success! As I sit down to write this, I'm still struggling with exactly what I want to say. There are no adequate words to describe not only the walk itself, but everything leading up to it—there was so much pure emotion associated with it all. However, if I had to pick three words to sum it all up, it would be love, support and passion. An abundance of love, support and passion! 

Let's start from the beginning. Back at the end of January, ACHA’s Events Coordinator Samantha reached out to me about being on the planning committee for the DCMARVA Walk for 1 in 100. We had a great initial conversation on the phone, and I was excited to accept her invitation to join.

Just over two weeks later, my husband Mike and I found ourselves at an in-person planning meeting surrounded by some incredible people. We instantly felt comfortable and like part of the family. Honestly, one of my favorite parts of the 2019 walk season was being on the planning committee and learning so incredibly much. With no prior exposure to event planning, fundraising and donor relations, sponsorship or the ins and outs of non-profit organizations, my mind was blown away. The behind the scenes efforts are incredible and fueled by some truly passionate individuals.

The next two plus months consisted of outreach calls and emails, incentive contests, an awesome kick-off event, and fundraising and securing sponsorships. Everyone involved brought so much passion to the table and the whole experience really opened my eyes to the fact that I want to end up in this field of work down the road. 

The Walk for 1 in 100 series and everything that ACHA is doing is to support patients and families and to empower providers—to pave the way for the future of care for those of us living with CHD. Most importantly, to give a voice to those of us living with CHD. The event was intimate, and for the first time that I can remember, everyone actively listened to the program. 

Mike and I were beyond honored to serve as the honorary chairs for the walk and to take a few minutes to share our story before kicking off the walk. The support, sense of community, and love was palpable in the energy of the event. There were hundreds of people in attendance and everyone there shared a genuine love and passion for the cause. 

We have always had an incredibly supportive crew. This year, I made it my personal goal to fundraise $5,000 individually. I'm giddy to share that as of right now I have raised $5,225 and that is before another close to $1,000 in matches hit! Those near and far donated and reached out to us, especially those who couldn't join us on the day of. I pushed myself this year, I stepped out beyond my comfort zone to fundraise as hard as I could, and it really paid off.

I think this year was one of the most emotional years for me in terms of all of those who came out to support. Although Mike and I have done a fair amount of community events and speaking, most of them are closed type functions, so our family and friends haven't been present. This year, my in-laws walked with us, and were able to see us speak. It was really special, especially with Mike just finishing up sonography school, to be able to share the experience with them. The same goes for my dad and Stacy (my bonus mom!), whose support has been unbelievable 

This year was also the year of the friends. Due to the specific circumstances surrounding my HLHS and the specifics of my health concerns, children are not in the cards for us. And yet we were surrounded by the kiddos who have also become ours. Our best friends came out in full force. Our 6-year-old goddaughter walked with us and our baby boys (14 months, a year, 6 months and 11 weeks) were all there. Among all of our friends, many have known me for 20+ years.

The same goes for Mike—his best friend for over half of his life and his family have never missed a walk. In fact, it was their 14-month-old son's second annual walk! To share our community with our crew, and for them to “see us in action” was beyond cool. Plus, we had tons of supportive friends, family and our other wonderful kiddos cheering us on from afar. We are truly blessed.

The Adult Congenital Heart Association and the walk series will raise money for research, education and continuing outreach. From working with parents to educate them on the lifelong care their child may need in the future, to supporting adults who have, or are currently, transitioning from pediatrics to adult CHD specialized care, ACHA is here for us. Our CHDs are our stories and I encourage you all to share yours! I hope you all are able to get involved either locally or virtually this walk season (click here do so) link to walk page, it's a blast and so rewarding.

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