By Amy Basken
ACHA Public Policy Manager

When I started in advocacy, it was shortly after Nicholas was born with a severe heart defect. I had felt blindsided by our experience and wanted to make a difference. Then I was invited to Washington, D.C., to tell my story.

What an addicting experience.

To think that I was in the nation’s Capitol—talking to someone who can change things, make them better. To think that my story could help.

By Paula Miller
ACHA Member Services Manager

Valentine’s Day is a day for relationships—most often with people you love, like your parents, your significant other, your siblings, and your friends. It’s a day of chocolates and flowers. Yet for those of us with CHD, building relationships outside of those we naturally love is an important aspect of our life.

Who else is as important as those I love, you may ask? As an adult with CHD, I think my relationship with my ACHD healthcare team and with ACHA are—but like many, these are relationships I sometimes take for granted and don’t always work to maintain.

By Terri Schaefer
ACHA Communications Manager

As 2012 comes to an end, and the inevitable year-end numbers are crunched, we here at ACHA would like to say thank you to all of our bloggers—this year, more than 15 bloggers wrote more than 135 posts! Our bloggers are volunteers, and we could not be more appreciative of them being so giving of their time, but especially of them sharing about living their lives with CHD in such an open way.

By Ann Gianola
ACHA Research Manager

It was still dark when I laced up my shoes for an early morning run. I’d charted my route along the Schuylkill River, hoping to get in eight quick and quiet miles before the rest of the city woke up. See, I’m training for a marathon and on that morning’s run (one of dozens of morning runs), I realized that conducting research is much like training for a marathon. Conducting research is hard, sometimes a constant uphill battle, and there are always bumps or curves in the road. Rarely do we get to sprint to the finish line when conducting research.

As I posted Monday’s blog, I couldn’t believe it when I glanced at the archived website link, which indicated that it was the 199th post to the ACHA Blog. Wow! It has been nearly a year and a half since the blog launched in May 2011, and in that time ACHA has been so proud and honored to share so many personal stories and experiences with the CHD community through this avenue.

By Ann Gianola
ACHA Research Manager

I’m a geek. A quantifiable geek. I’m a geek because I attended and ENJOYED attending the Health Data Initiative (HDI) Forum III: Health Datapalooza in Washington, D.C. last week. HDI began three years ago with 10 people in a conference room and this year’s event drew more than 1,600 business leaders, academics, information technology gurus, non-profit leaders and policy makers. Comprised of keynote speakers, demonstrations, and group discussions, Health Datapalooza was an energetic, extraordinary opportunity to learn from key innovators in health information technology to promote access to and sharing of health data to improve patient outcomes.

By Amy Basken
ACHA Advocacy Coordinator

I love chocolate. Dove Dark Chocolate Promises. Well, and M&M’s, too. This should come as no surprise to anyone who knows me.

Any woman I know would agree that chocolate is wonderful—it reduces stress, renews energy, and may even be an aphrodisiac. Many women will also agree that chocolate may save lives—particularly those of our spouses. Thus, in our house, the tradition of chocolate for Valentine’s Day has morphed to the giving of a bag of Dove Chocolate once every 28 days.

By Amy Basken
ACHA Advocacy Coordinator

I love working with ACHA as they advocate to change the landscape for those living with congenital heart defects—or is it congenital heart disease? Ugh. A few months ago, I spent an entire day asking countless patients, parents and professionals about whether I should refer to CHD as congenital heart disease or congenital heart defects in our advocacy documents. I hadn't thought about what a difference a word could make.

By Terri Schaefer
Communications Manager

On behalf of ACHA, and especially all of our ACHA future bloggers, I want to welcome you to our new ACHA Blog! Thank you for visiting, and I’m looking forward to you becoming regular readers to see all that we have to offer; we have quite a few bloggers on board who will post about many topics relevant to the CHD community.