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Having been a stroke survivor for 22 years and an American Heart Association (AHA) advocacy volunteer for most of those, I have had the unique privilege to attend numerous (maybe 15??) Lobby Days in DC. In 2002, I was struggling to recover from three strokes and had no idea what advocacy was. As soon as I shared my story with my Senator, I learned that my experience had power. I was hooked! Almost two decades later, I am still at it and am truly grateful for each opportunity I have.
I knew two fellow survivors who would be attending. The connection and shared experiences between survivors are inexplicable and special. I had lunch plans with Leigh Pechillo, a passionate and inspiring sudden cardiac arrest survivor (Read more about Leigh here.) We spent hours discussing our past challenges, current projects and awesome plans for the future. I also spent quality time with Roxanne Watson during my DC trip. Roxanne is a heart transplant recipient whose story and subsequent life mission is inspiring and tear-provoking. (Read more about Roxanne: https://www.heart.org/en/news/2019/02/04/she-uses-her-new-heart-to-make-sure-more-people-enjoy-second-chances)
Our legislative training took place prior to our day on The Hill. We listened to an esteemed panel of American Heart Association leaders who discussed details on our policy asks, including the topics of Surprise Medical Billing/Balanced Billing, Medical Research Funding and Tobacco Flavors. We then heard from Christopher Kush from Soapbox Consulting who taught us about an effective legislative strategy.
Next up was a state strategy consultation: A bit smaller than other years, my Massachusetts group was a five-person team. I’m amazed each year at how a group of newly introduced people are able to mesh their years of experience and stories to create a compelling, synchronous, powerful ask of our legislators. It was a pleasure to spend the day with our Regional Vice President of Advocacy, David Day and veteran cardiologist Dr. Gary Balady. We were also lucky that our grassroots manager, Rebeca Scharler, and the American Heart Association’s Chief Medical Officer, Dr. Mariell Jessup, are Massachusetts residents. The unique combination of policy expertise, a medical perspective, a compelling patient story and a high-level overview of the AHA’s priorities made us a formidable team. I also joined the Rhode Island team since I grew up in Warwick (my parents still live there) and I sit on the R.I. Advocacy Board. In total, I met with the staff of eight Federal legislators. Fortunately, all were supportive of our asks to increase #NIHfunding, to #banflavoredtobacco and to #endsurprisebilling. It’s a controversial time in D.C. but we were pleased to continue these important conversations.
Our final day in DC included a Hill Day debrief and an Advocacy Academy. Along with Mark Schoerbrel, the American Heart Association Executive Vice President of Advocacy, I had the privilege of sharing my global advocacy experience with attendees. We updated the group on the AHA global priorities and programs and I shared my experience of attending the Global Cardiovascular Forum in Tokyo, Japan.
My synopsis wouldn’t be complete without a quick look at an accidental occurrence. Arriving at breakfast on Friday morning, I was greeted by fellow survivor, Roxanne Watson. Roxanne hosts her own radio talk show and had plans to record American Heart Association Chief Executive Officer, Nancy Brown and incoming Chair of the Board, Dr. Mitchell Elkind. She asked me to join her and I was more than happy to oblige. I had a firsthand account of the interview and was even asked to share my story as part of the show. Roxanne is always growing and expanding the reach of heart and stroke health, and I was thrilled to be a part of it. Listen to this dynamic interview here: https://www.wrcr.com/ Survivor Power!
Sometimes I debate if I should keep sharing and advocating? Is my story just old hat? Do I even make a difference? Yet, all it takes is an event like this to remind me that I am a critical part of the team. Together we are stronger. I continue to advocate to help those who come behind me. For the stroke survivors who follow in my path. My voice can help make their experience better.
I speak out for those that have been through even worse than me. My favorite attendee this year was Parker…a 10-year-old heart transplant survivor. Check out his outfit?! We became fast friends. While many discussed his heart story, I knew a way to connect. We covered all video games like Super Smash Brothers and Minecraft. Parker’s smile is why I will continue to advocate.
My heart is full for so many reasons…including Parker.
Do you want to share your heart health opinion with your legislators? You can do it right now by working with the American Heart Association: https://www.yourethecure.org/ !