In reality, the advent of the internet and what I recall as an AOL chat room was my initial introduction to ACHA. It was in late 1998 or 1999 and like so many adults living with congenital heart disease (CHD), I was looking for someone like myself. I knew I couldn’t be the only one alive who was born with the birth defect. There had to be someone out there who understood me.
Two of the young people I “chatted” with were Karen Klein McNulty and Anthony Cordaro, Jr. They, along with Bonnie Paulsen, Kimberly Ochs, Mary Kay Klein (Karen’s mother), and Tony Cordaro (Anthony’s dad), were the founding board members of ACHA. What a vision they had! And what a turn my life was about to take!
I remember distinctly the first time I met Karen in person. It was in front of the fish tank in the lobby of Boston Children’s Hospital. I was there for my first appointment with an adult congenital heart disease specialist. While that seems like yesterday, it has been at least 14 years. I was in my late 40s and Karen was a young 20-something-year-old. Yet we connected in a way that, from what I know so well today, only another adult with CHD can understand. I had finally met someone else living with CHD.
And with that encounter, my life changed.
Karen asked me to help with the first ACHA conference that was going to be in Boston in a few months. So back to Boston I went. My first ACHA volunteer experience was working in the ACHA office in the Klein’s house and making name tags for the conference. I later worked at the registration desk of the conference, which was held at the Best Western Hotel.
The conference was amazing! I couldn’t believe what I learned and how many others I met who had experiences similar to mine. I heard unbelievable stories and enjoyed the talents of so many creative CHDers. Among the many were Ellen Greenberg, who thrilled us with her voice, Laura Goldenschue, who played guitar like a pro, and Anthony Pugliese, who ate lobster with me on the way to the airport.
I met people I am still friends with today and others I have sadly grieved over since. My life was forever changed! I left with hope and some trepidation but I knew that my life would be different. No longer would I hide my CHD—I would talk about it.
Shortly after the conference, I was asked to be on the Board of Directors. I didn’t give it a second thought and said yes, of course, I will be a volunteer board member. There was no staff at that time so the board ran ACHA all the way. We wrote for the Laurel Wreath, we asked others to write for the Laurel Wreath, we edited the Laurel Wreath, and we addressed and stamped the mailings of the Laurel Wreath, ACHA’s first ACHA newsletter. We planned regional conferences and more national conferences. The list goes on and on. It was hard, yet rewarding work!
Fast forward 14 or more years and ACHA continues to play a major role in my life. I am now giving back in a way I never thought possible when the connection began. I work tirelessly every day to make sure that everyone living with CHD, child and adult alike, thrives through the lifespan and lives a life unaffected by congenital heart disease. That is my passion!
Karen, you are missed by all who knew you and those who never had the privilege. I know you are so proud of where we are today! Thank you Anthony and Bonnie for your vision and the gift of ACHA that you gave to all of us. Here’s to you all and to ACHA – to life lived well and lived long!
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