12/10/2013 1:20 PM
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.
Alissa Butterfass was born with transposition of the great vessel, which was corrected with a Mustard procedure at age 2. In addition to being a mom, wife, daughter, sister, friend, wannabe author and chocoholic, she volunteers as the Co-President of her local chapter of a nonprofit organization. Until recently, Alissa worked part time as a senior marketing manager at a Fortune 500 company.
Copyright ©2013 ACHA
1 comment(s) so far...
By Terrie Penticoff on
12/17/2013 8:31 AM
Re: Congentially Corrected Transposition of the GA
I'm jealous of you! You had your transposition corrected surgically! That is a very big plus! ME - Well - I'm a miracle baby. I was not born blue. Never had surgery - until I was 44 and had to have my first pacemaker implant for WPW (which went bye-bye) with Third Degree Heart Block. Which meant no AV Node existed anymore. Having received my fifth pacemaker, which was corrupted with bacteria; I encountered staph and blood sepsis.
Being Catholic, I prayed. Now I have Associated Pulmonary Arterial Hypertension of the lungs, due to scarring, blood clots and lots of coughing fits.
I think you have done quite well for yourself. You should be proud your parents taking care of you when you were younger. I did not have that advantage either, since I was not diagnosed until I was 11 at junior high.
I'm still around with multiple issues. Doing everything I can to stay active and educated. Just recently, became a Docent at a museum, which I love doing. Provides opportunities for walking, meeting people from all over the world and educational opportunities as each exhibit changes.
In losing weight - it helps to drink purified water only. Eat lots of fish, recommended by the EPA. My son fishes, so I keep track of what is safe to eat from the ocean and what is not recommended by the experts.
I now have a grandson. A totally unexpected chapter in my life. What a joy! A true gift from God.
I talked your leg off. If you feel like writing someone, I understand your writings completely. I like your intelligent blogs. I understand your prospective on life, especially when people speak of before and after.
I am also a practicing Eucharistic Minister. Serving approximately 200 parish community members each week or more.
I was a legal secretary during my younger years doing transactional work with in-house corporate counsel in several venues. The most highly cherished years, were when I worked in the Health Department.
Take care of yourself.
Best Wishes To You,
Happy Holidays to you and Your Family