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: Activities in Full Bloom

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

As Philadelphia’s daffodils and forsythia open up, here at ACHA central all sorts of activities are already in full bloom. On March 1, 77 patient, family members, and care providers visited 100 congressional offices to speak up for the lifelong needs of congenital heart patients. This year’s Congenital Heart Lobby Day focused on three issues: Continuing the 2012 CDC funding for CHD health surveillance into 2013; supporting NHLBI efforts to research CHD across the lifespan; and inviting House members to join the newly-formed Congenital Heart Caucus. Even if you could not come to Lobby Day, you can email your lawmakers today to let them know that they need to take these actions to help improve and prolong the lives of those of us born with heart defects. It only takes a moment—to learn how, click here. We owe tremendous thanks again to our amazing Congenital Heart Lobby Day volunteer advocates, all of whom generously donated their energy, time and travel costs to unite their voices on behalf of the millions of people with CHD and make a difference for the CHD community. Thanks also to Mended Little Hearts for their sustained partnership in Congenital Heart Lobby Day, and to the American College of Cardiology for their continued support.

Other “blooming” activities this month are membership and education. Thanks to our new ACHA poster and postcard, more patients and family members than ever before are contacting us each week. Many need help finding ACHD care, and we connect them to our ACHD program directory. Others need a listening ear, and a connection to our H2H Ambassadors. Some just want to tell us their story, and are interested in sharing their story through a video. Some want to give back, through volunteering with a Congenital Heart Walk, advocacy activities, or by being a peer ambassador. If you are interested in getting more involved in ACHA, please contact us—we would love to add you to our “garden” of amazing volunteers.

The final new activity at ACHA is our patient input survey. As part of our strategic planning process, ACHA wants to know more about your experiences with both CHD care and CHD research. As of today, nearly 500 people have already responded—we are so thrilled to be getting this much input thus far, and can’t wait to hear more. You can take the research survey here.

Thanks again for all your support building a better future for those born with the world’s #1 birth defect,

Amy Verstappen ACHA President/CEO

Posted on Tuesday, March 13, 2012