The Wall Street Journal recently published an article, "Facing Lifesaving Heart Surgery, Twice," about people with congenital heart disease who had surgery as babies or children and are learning later in life they need further surgery. The article written by Ron Winslow, which includes a quote from ACHA President/CEO Amy Verstappen, uses stories from people around the country to emphasize the importance of CHD care for adults.
Read the article and watch the accompanying video by clicking here.
I hope everyone has been having a good summer. It’s hard to believe this is August already! Of course, this means that ACHA’s Board of Directors just held our annual election. We are very pleased to welcome John Fernie and Sean McCarthy as the newest members. I am sure they will be fantastic additions to our leadership team.
Serving on the Board for ACHA has been a great honor for me. The role of the Board is to support the leadership and staff in defining and pursuing a strategic vision for ACHA, while also ensuring that we can develop the resources to meet these goals. This means that a big part of our job is fundraising. Another part of our job is governance—that is, making sure we meet all the requirements of a responsibly run non-profit. We also provide input and insight into the programs and services that ACHA provides, and the projects we get involved in.
As the national summer heat wave continues, it is hard for many of us to think about anything other than staying cool. But despite the heat, summer is the time for one of the most important things you can do to speak up for CHD—in-district visits. During August, ACHA members around the country will be sitting down with their national lawmakers at their home offices to let them know how important it is to sustain and increase government investment in CHD research and health surveillance throughout the lifespan. Think talking to your lawmakers and their staff won’t make a difference? Think again—it was the efforts of CHD patients, family members, and healthcare providers that resulted in the first-ever targeted federal funding for congenital heart public health efforts in 2012.
In a few days it will be the first day of summer, which here in Philadelphia means the sound of kids jumping through sprinklers, the smell of barbecue, and that lazy feeling that comes with hot, humid days. But at ACHA we will be turning up the air conditioners and staying hard at work on all our exciting summer initiatives. One of our biggest recent achievements is the publication of our 2011 Annual Report, designed by ACHA Heart to Heart Ambassador Karen Psolka.
Webinar Update: Social Security Disability and the Compassionate Allowance Program in the Adult Congenital Heart Community, June 20
ACHA announces its newest webinar, "Social Security Disability and the Compassionate Allowance Program in the Adult Congenital Heart Community," presented by Jamillah Jackson on Wednesday, June 20, 2012, from 12-1 p.m. EDT. The webinar will cover the difference in Social Security Disability (SSDI) and Social Security Insurance (SSI), the seven CHD diagnoses added to the Compassionate Allowance Initiative (CAL) initiative in July 2011, and much more. To register, click here.
This webinar was made possible in part by an unrestricted educational grant from Actelion.
Do you have an object that has come to mean something very special to you throughout the ups and downs of having CHD? A favorite stuffed animal, toy, or other knick-knack that you’ve kept around to remind you of where you’ve been and how far you’ve come?
Share a picture of this memento with ACHA! We are looking for members to submit a picture of your keepsake along with a few sentences about why it’s so meaningful to you. We’ll share photos and stories on our Facebook page!
Azaleas in bloom, pollen in the air, and our Congenital Heart Walk around the corner—it must be May in Philadelphia! Over the past two years, I have had the pleasure of attending Congenital Heart Walks all over the country. Whether in Oakland or Ohio, Congenital Heart Walk attendees share remarkable qualities.
ACHA is excited to announce another step in the right direction!
As you know, the 2012 budget that was passed in December 2011 included $2 million in funding to the Centers for Disease Control and Prevention (CDC) for congenital heart disease (CHD) surveillance. On Monday, April 9, the CDC announced plans to use that money!