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In the Beginning

Thursday, November 21, 2013

By Mary Kay Klein

In the summer of 1997 my husband and I returned from a trip to find four happy and excited young people sitting in our living room, talking about starting a group for adults with CHD. The group included the three co-founders of ACHA—our daughter Karen Klein, Anthony Cordaro, Jr., and Bonnie Paulsen—along with their friend Tanya De Herrera.

During the following year, the co-founders, along with three others, Tony Cordaro, Kim Ochs and me, formed the first ACHA Board. As ACHA's first president, Karen made multiple visits to a local attorney, and, with support and input from the Board and a generous donation from a friend, she put together the resources and documents needed for us to be incorporated in the Commonwealth of Massachusetts.

The ACHA office was established in our home in 1997, where it remained for the next seven years. It was a privilege to have the organization here. Karen spent many hours talking with adult CHDers and their families, both in person and electronically. The Laurel Wreath, ACHA's first newsletter, developed into a quarterly publication. With the help of many local members, we put together the newsletters by hand, folded them and prepared them for mailing. Karen put her computer skills to good use in laying out the newsletter, and she developed the first ACHA database, which we used to print mailing labels for the United States and 27 other countries.

One of Karen's most important projects was creating the original ACHA website. When we discovered that many members were not reaching the website, we quickly changed the URL from one that included the words "congenital" and "heart" to www.achaheart.org, which our members had no problem accessing.

Before long, ACHA had developed contacts in the major ACHD centers, put together a directory, made a list of resources and support groups for members, established a network of regional representatives, and encouraged the involvement of medical professionals and other caregivers.

ACHA's first conference for adults with CHD, their families, and medical professionals, was held in Boston in 2000. Karen worked very hard to get as many members to Boston as possible; she asked people to donate frequent flyer miles, and made arrangements with local members to host participants from out of town.

Our next conference was planned for the Chicago area from September 14-16, 2001. When we emailed the registrants to say the conference was postponed because of 9/11, our email provider shut down all our accounts. We were accused of spamming because of the quantity of emails. It took awhile to get that straightened out!

2001 was a year of change. Karen married the love of her life, James McNulty. Anthony Cordaro, Jr., ACHA's first vice president, became president. We expanded the board by electing seven new board members that year. Karen and I continued to manage the office until 2004, when ACHA had grown to the point where it was no longer practical to have a home office with an all-volunteer staff. We packed many memories in those cartons of files and materials we sent on!

On August 31, 2005, Karen died suddenly on her way to work as a librarian at Boston College.

I am grateful that her dedication to helping others live with CHD, to helping adults and their families and friends to know they are not alone, lives on in ACHA, and I treasure the memories of the years Karen and I worked so closely together.


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