Discussion Forum
A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.
Leadership Update: People Power on Display

This is the leadership update from March's e-newsletter.

What does democracy mean to you? The dictionary tells us that democracy is an ancient Greek word combining the word for people, “demos,” with the word for power, “kratos”—people power. For many of us, regardless of political persuasion, what goes on in Washington can sometimes feel far removed from the wants and needs of actual people. I was reminded of democracy’s origins last week, as I said goodbye to the beautiful country of South Africa. Many of us remember 1994, when South Africans expressed their “people power” by standing in line for days to vote in that country’s first democratic election.

This year, the World Congress of Paediatric Cardiology & Cardiac Surgery held its meeting in Africa for the first time, and I was deeply honored to be invited to Cape Town to offer opening remarks and participate. The meeting was a humbling reminder that surgery for congenital heart problems is only a dream for the large majority of the world’s children born in developing nations. Ensuring that every child born with CHD gets needed heart repair in infancy should be a top global priority. But as countries expand these surgeries, they also need to plan ahead for to address these children’s ongoing health needs as CHD survivors. You can read a summary of my remarks here.

On March 19, people power will be on proud display in Washington, D.C.—specifically, the strong and unified voice of the congenital heart community—as we come together for Congenital Heart Advocacy Day. As of today, more than 100 advocates from 26 states will be attending, each one passionate about a better future for the congenital heart community. Each person will get a chance to sit down to talk directly with their own lawmakers and tell their story of how CHD has impacted their lives. Some will talk about losing a child to CHD, or struggling as they watch their preschooler cope with the aftermath of multiple surgeries. Others will describe aging with CHD, and their struggles with finding answers to their health problems. Some will report the challenges that healthcare providers face in caring for this complex and underserved population. All of these stories will come together to support a single message: The need to dedicate more resources to improving and prolonging the lives of congenital heart survivors.

Think we won’t make a difference? Think again! Thanks to the efforts of past Congenital Heart Advocacy Day participants, not only was the Congenital Heart Futures Act passed in 2010, but despite an exceptionally tight budget landscape, $2 million was provided to initiate new CHD-related activities in 2012. But we can’t stop here—it is only through continued advocacy that we can ensure that this support is sustained and increased to help this country’s rapidly-growing population of CHD survivors. Can’t come on March 19? You can participate in contacting your lawmakers from home; click here for more information!

Thanks again for all your support—together we can build a brighter future for every person born with CHD.

Amy Verstappen
ACHA President/CEO

Posted on Thursday, March 14, 2013