A Letter From Our President and CEO: ACHA's First Newsletter

Posted Friday, Oct 20, 2023

Reposted from ACHA's October 2023 Heart Happenings e-newsletter: 

Greetings!

As many of you know, we have been celebrating the Adult Congenital Heart Association‘s (ACHA) 25th Anniversary throughout 2023. Given that the actual date of ACHA’s incorporation is this month – October 27th to be exact – I thought we should use this edition of Heart Happenings to reminisce a bit about our first printed newsletter.

Called The Laurel Wreath, ACHA’s original newsletter was published in Fall 1998. Click here to take a look at this issue. It was a four-page newsletter that started out by explaining why it carried the banner of The Laurel Wreath (hint: the Laurel Wreath is an emblem of honor and achievement). That first issue contained A Message from the ACHA Board, which stated, "the purpose of our organization (ACHA) is to educate the public, adults with CHD, and the medical community about adult congenital heart issues. We also want to link adults with CHD together for the support and emotional gratification that comes from having contact with others who have had similar experiences."

The first issue of The Laurel Wreath also featured A Message from the President, Karen Klein McNulty. In that message, Karen explained how she came to meet Bonnie Paulsen and Anthony Cordaro Jr. through an email listserv, and the three of them made the decision to start an organization. Karen wrote: "The ACHA hopes to address ACHD needs through publishing a newsletter, forming support groups, establishing a web presence, and maintaining a national ACHD resource directory (including clinics, camps and bibliographic sources." Karen went on to say, "We also want to educate the general public about CHD, and encourage more research."

(More than 20 years later, Karen’s mother Mary Kay Klein, who is an ACHA Emeritus board member, echoed this sentiment and shared more about these objectives in this video.)

Bonnie also wrote an article for the first newsletter that started out, "For as long as I remember, I always dreamed of meeting other people with heart conditions," and she described the joy as she first met Karen, Anthony and Tanya DeHerrera in Boston in 1997. "The neatest thing was that even though we all had our CHD in common, we were all so different. I really enjoyed getting to know each one as an individual. I felt as though we could all learn so much from each other."

I keep a copy of that first issue of The Laurel Wreath in my desk at our ACHA office (now based in Media, PA). I often think about the original intent of our founders as I contemplate decisions or directions for our organization. While the world has changed much over the last 25 years – especially with regard to the tools and methods we use to connect and communicate – I am proud that ACHA has remained true to its stated goals of educating different and complex audiences about adult congenital heart issues, of linking adults with CHD together for support, and encouraging more research, both through our advocacy of federally-funded research and the launch of our own ACHD research program. Like any organization, we face many challenges as we seek to adapt to constantly changing needs, realities and technologies. But if we keep the purposeful words of our founders top of mind – and if we all strive to continue "to learn so much from each other" – I know the individual and collective impact of ACHA can be even greater during the 25 years ahead.

Mark Roeder, President and CEO

Contact Congress Today

Demand better research, surveillance, and awareness of ACHD by calling on Congress to act now on the Congenital Heart Futures Reauthorization Act of 2024. Contact your elected officials today.