From the February 2019 issue of Heart Happenings:
Hello ACHA members, and Happy Heart Month!
I am the Immediate Past Chair of the ACHA Board of Directors, and I am also the parent of a 38-year-old son with tetralogy of Fallot. I found ACHA and got involved when, 20+ years after being told that my son was “cured,” he began to have rhythm problems and went to an adult cardiologist for advice.
As is so often the case, it did not go well.
A dear friend of mine and former board member, Martha Pauly, also the parent of an ACHDer, recommended I contact the Adult Congenital Heart Association. I was not familiar with ACHA, but I spoke to then-President Amy Verstappen, who explained to me that ACHDers need to been seen by a CHD cardiologist specialist.
If we did not follow that advice, I do not know if my son would still be with us. It is what you do not know, rather than what you do know, that can be dangerous.
This is just one example of the support that ACHA offers. There are many resources, including an amazing website, webinars, patient/family conferences, advocacy programs and the exciting ACHA ACHD Accreditation Program that will ensure that all patients receive consistent, high-quality care that they need and deserve.
I am most excited that ACHA has made the strategic decision to fund research in adult congenital heart disease. There is a great deal of study of the pediatric CHDer, but little to no data on what happens to these kids as they go through the transition to adulthood and as they go through life as an adult with a CHD. This is one of the most important initiatives ACHA has taken on.
All of these programs take funding. It is critical that all members of the CHD community help by giving to ACHA. My wife Wendy and I are lucky that we have the wherewithal to be able to sponsor February’s Match Challenge. For every dollar you donate of $25 or above, our foundation will match 50 cents. So your financial support in February will generate an additional 50% for ACHA.
This is my last year on the Board of Directors, an amazing group of ACHD advocates who work hard to help our community to thrive. I am very excited that Cindy Huie has taken over as the new Chair of the Board. I know she will do an excellent job of leading our amazing organization, and you will learn more about her in the next issue of Heart Happenings. Until then…
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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.