Tag Archives: heart

My Heart Is Full!

I was honored to attend the American Heart Association’s You’re the Cure on the Hill Federal Lobby Day last month.  More than 200 advocates traveled to Washington, DC to meet with lawmakers to discuss heart health and stroke issues.  It was an awesome three days of learning, advocating and connecting with other heart and stroke stakeholders from around the country. I may need rest and recovery time but my heart is happy.

Over 200 advocates travel to Capitol Hill to advocate for heart and stroke issues.

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)

Leigh Pechillo, Lisa Deck, Roxanne Watson
Heart & Stroke Survivors attend You’re the Cure on the Hill.

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. 

The Massachusetts lobbying team visits the office of Senator Elizabeth Warren.

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. 

Global Ambassador Lisa Deck discusses global advocacy during AHA”s Advocacy Academy.

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!

Podcast Interview: Dr. Dr. Mitchell Elkind, Host Roxanne Watson, CEO Nancy Brown & Lisa Deck

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.

American Heart Association Advocates: John Potvin (RI), Casey Bolton (NH), Parker Bolton (NH, Lisa Deck (MA) & Andy Deloretto (RI)

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/ !

Heart Month Special Heart & Stroke Survivor Stories

February is American Heart Month: a month dedicated to raising awareness of heart disease and stroke. Heart disease and stroke cause 1 in 3 deaths among women each year, killing approximately one woman every 80 seconds.

I know facts and statistics are important- even imperative to funding research, educating the public and developing drugs to assist patients. Yet, my primary interest and what I like to share is the people who are effected by cardiovascular disease. And sadly, there are plenty of them.

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Thirty days of Heart & Stroke Survival Stories to inspire, educate and get you engaged in the conversation during Heart Month!

I’m continuously amazed at the strength, resiliency and passion of cardiovascular and stroke survivors and caregivers. Clearly, with incidence numbers so high, there are many people affected by these diseases…I’m fortunate to know an army of the most dedicated ones.

Serving as a longtime volunteer with the American Heart Association, I have made meaningful connections with many volunteers and advocates, and have ultimately learned that I am not alone. I’ve lost much from four strokes, two brain surgeries and a rare disease diagnosis, but gained even more: perspective, inner strength, a deep faith, unconditional family & friends and a network of peers who have overcome similar obstacles. I’m thrilled to introduce you to some of these incredible people over the next month. Please check out www.facebook.com/ISurvivorLisaDeck daily in February!

I reached out to my friends and network of people involved in the “Heart World” and am thrilled at so many quick and enthusiastic responses. Please learn about these heart heroes and the difference they are making. I truly believe in the harnessing of positive energy through shared connections. These heroes are just living their lives but ultimately making our communities better by sharing their challenges and victories.

Happy Heart Month! Please don’t forget to Wear Red & Raise Your Voice on National Wear Red Day – Friday, February 3, 2017. Please use the hashtag #GoRedWearRed and tag me (@ISurvivorLisaDeck) in your pictures.

Like I did last year, I hope to make a collage of all the people who are going red and making a difference!