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Why I Support ACHA

Tuesday, December 10, 2013

By Alissa Butterfass

This is the season when many of us, our friends, and our family open our hearts and wallets to donate much-needed funds to those causes most important to us. If you are like me, there are probably several charities and organizations that you want to support—and if our pockets were deep enough we’d give to them all. So today I want to share why ACHA is one well-deserving organization to which I donate year after year—and I hope you will too.

When I first learned about ACHA back in 2004, I was just a year married and starting to think about starting a family. Through the ACHA Forums and the ACHA National Conference, for the first time I met—virtually and then in-person—other people born with congenital heart defects. The forums were an invaluable source of support and knowledge as my husband and I worked with my cardiologist to determine how to build our family.

The two aspects of ACHA that I most appreciate these days are (a) its advocacy efforts and (b) this blog. In terms of advocacy, I like knowing that ACHA is looking out for CHDers, identifying the greatest needs for us as a group—such as affordable healthcare, specially-trained medical professionals and long-term research on lifelong prognosis, treatment and impact of CHD—and meeting directly with the lawmakers and government officials to increase awareness of CHD and ensure our needs are met. And I love that the blog has brought the very personal and unique stories of our community to life. Together we can follow each other’s ups and downs, trials and triumphs, and know that we are not alone. Reading the blog every few days reminds me that while we each have a CHD (or know someone who does) each person’s perspective is different, varied, heartwarming or heartbreaking. And ACHA is a community and organization that works to support all of us.

Only this year did I learn, through ACHA, that congenital heart defects are the #1 birth defect. That means there are a lot of us out there, and more being born into our community each day. Today’s infant and child CHD patients will continue to need support and care as they age into adulthood. We are lucky to live in a time where a person born with a heart defect can most likely live a long, full life. But we continue to have medical needs—and because those of us who are adults now are among the first to live to adulthood, there might be long-term impacts and issues we don’t even realize yet. I know ACHA will be there every step of the way, educating patients, families, medical professionals and lawmakers, keeping us—and them—apprised of the latest research and technology, and helping CHDers understand how to get the best care possible.

To support ACHA, click here .

Best wishes to you and your family for a happy and healthy 2014.


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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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