This is the leadership update from ACHA's April e-newsletter.
Last week ACHA celebrated an extraordinary milestone: A Centers for Disease Control and Prevention (CDC) announcement of a new grant program funding public heath surveillance activities for teens and adults with CHD. In addition, the CDC has announced a summit meeting to address how to best gather the information needed to track the health and well-being of the congenital heart community throughout the lifespan. These activities were made possible by the $2 million of funding set aside in 2012 to fund the Congenital Heart Futures Act. When ACHA initiated the first Congenital Heart Lobby Day in 2005, this was our vision—to initiate federal research and surveillance activities to address the unmet needs of the CHD community. It is because of you—your support, your donations, and your participation—that this was achieved.
But we know that this is only a first step, and that many other milestones lie ahead in our march towards a better future for congenital heart survivors. Last month, ACHA helped convene the 6th National Congenital Heart Lobby Day to ensure that federal support for CHD activities is sustained and increased in the years to come. In partnership with Mended Little Hearts, and with the support of the American College of Cardiology, more than 80 congenital heart patients, families, and healthcare providers visited more than 100 congressional offices to get the word out about this country’s number one birth defect—congenital heart disease. In addition to asking for sustained support for the Congenital Heart Futures Act, advocates invited their lawmakers to join the newly-formed Congenital Heart Caucus. This caucus will be a new forum for Representatives from around the country to speak up for the needs of congenital heart patients and their families. Even if you were not able to come to Lobby Day, we hope you will send your member of congress an email to ask that he or she join the Congenital Heart Caucus today—click here for more information.
In addition to the Congenital Heart Caucus, Lobby Day 2012 had another exciting addition—a videographer. We were thrilled that Mark Burson donated his time and talents to document the stories of advocates and Lobby Day efforts. The video he produced is an amazing testimony to what the congenital heart community has been able to achieve by putting our passion into action.