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A Shared Idea That Grew

Friday, November 01, 2013

By Tony Cordaro

Anthony Cordaro, Jr., Karen Klein, and Bonnie Paulson were in their early twenties when they met via an internet listserv run by CHIN (Congenital Heart Information Network). Bonnie suggested that they put together a newsletter for the group. Karen had developed a website with information about CHD. Anthony developed the idea of combining Bonnie's newsletter idea with Karen's website to launch a nonprofit to accomplish the various ideas that they had been discussing.

Anthony enlisted me, his dad, and, Karen enlisted her mother, Mary Kay, as well as her college friend Kimberly Ochs, to assist from a business acumen, structure, and advisory capacity. ACHA was incorporated in 1998 as a non-profit 501(c)(3) to serve the needs of the growing number of adults with CHD. The six of us were the organization’s first officers and Board of Directors. We wrote the bylaws and began setting goals and expectations of the group well beyond a simple informative newsletter.

Karen served as the group’s first president, Anthony Jr. as vice president, and the rest of us rotated duties as needed. All expenses were from our own pockets. However, as we got the word out, small donations arrived. The first “legal address” was Karen’s home where Mary Kay, Bonnie, Karen, Kim and others would help stamp envelopes and do mailers of the newsletter.

The first logo and newsletter was named The Laurel Wreath. Our first conference was in Boston and we had more than 100 participants. Dr. Gary Webb from Canada was our keynote and GUCH sent over several members to truly make it an international conference.

We were overjoyed with the success of the first conference and to see so many CHDers who had traveled so far to spend a weekend learning more. We also discovered that we had only scratched the surface of the hunger for accurate information that our CHD community wanted to know about—insurance, spousal relationships, childbirth, life expectancy, medical care, social security, operations and procedures, medical hardware devices, terminology, group and individual support, just to name of few of the topics.

As the organization grew and the “family origins” evolved, Anthony Jr. served as the organization’s second president. During his term, other members were brought onto the board and the exponential growth of the organization began.

I cannot say enough good things about the “three kids” – Anthony Jr., Karen, and Bonnie, who had an innate desire to reach out and meet CHDers and contribute something great to others when seemingly much had been taken from them at birth. They are the ones who deserve the credit for having a huge visions and personal needs to share and learn about themselves and others.

Unfortunately, Karen passed away too early in her marvelous, caring life; however, she left a legacy beyond imagination and is still touching lives of CHDers and their families today and will continue to do so into the future. Anthony Jr. is now Dr. Anthony Cordaro, Jr., an adult/child and adolescent psychiatrist at Children's Hospital Colorado. He is married, and he and his wife have a beautiful 16-month-old daughter.

I am absolutely humbled beyond words to see the growth of the organization and to meet and speak with so many folks who have expressed what positive impact that ACHA has had (and is having) on their lives and their families. It is most humbling indeed and I am most grateful to all of the CHDers, nurturing family members and caregivers, generous volunteers and donors, the supportive medical community, and understanding staff members for all that they do. We are in this together as a community with a common cause.

Having recognized and honored our past, the important thing now is to move forward and grow ACHA even to newer heights—to reach out to more folks with our message to improve the quality of life and extension of lives of adults with congenital heart defects.

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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

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