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Leadership Update: Our Vision of a Long, Healthy Life Unaffected by CHD

Tuesday, Oct 16, 2012

What do you see when you look into the future? At ACHA, we see a time when every person born with congenital heart defects lives a long, healthy life unaffected by congenital heart disease. This fall, ACHA’s Board and staff came together to review progress in achieving our strategic plan, our blueprint for progress towards a better, brighter future for congenital heart patients.

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Webinar Update: Adult Congenital Heart Disease and Dental Issues, Oct. 16

Tuesday, Oct 09, 2012

ACHA announces its newest webinar, "Adult Congenital Heart Disease and Dental Issues: What’s up with Preventive Antibiotics?" presented by Disty Pearson, PA-C, on Tuesday, October 16, 2012, from 7-8 p.m. EDT. The webinar will cover why the dental guidelines changed and what you, as an adult with congenital heart disease, can do to maintain excellent oral health and why this is an important part of your care as a ACHD patient. To register, click here.

This webinar was made possible in part by an unrestricted educational grant from Actelion.

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Leadership Update: CHD Prevalence and Impact

Thursday, Sep 20, 2012

As I write this letter, many of ACHA’s neighbors in Philadelphia are gathering to celebrate Rosh Hashanah, the Jewish New Year. This celebration of new beginnings is also being felt here at ACHA’s office, as September brings an exciting new beginning for the congenital heart community. Last week, the Centers for Disease Control and Prevention (CDC) awarded three grants to fund the first-ever efforts to identify the prevalence and impact of congenital heart disease (CHD) among U.S. teens and adults. Using a blinded, merit-based selection process, the CDC selected researchers in three locations—the New York State Department of Health, Emory University, and the Massachusetts Department of Public Health—to pilot data-gathering activities in teens and adults with CHD.

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ACHA’s Advocacy Efforts Pay Off: CDC Announces CHD Surveillance Funding

Tuesday, Sep 04, 2012

As a result of ACHA's significant and ongoing advocacy efforts, the first-of-its-kind funding for adult congenital heart disease surveillance has been awarded through the Centers for Disease Control and Prevention (CDC).

The Congenital Heart Futures Act was passed as an amendment to the Affordable Care Act in 2010. In December 2011, $2 million was appropriated to the CDC for surveillance of CHD across the lifespan.

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Wall Street Journal Publishes Story on Congenital Heart Care for Adults

Wednesday, Aug 22, 2012

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.

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Leadership Update: From the ACHA Board of Directors

Tuesday, Aug 14, 2012

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.

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Leadership Update: Speak Up for CHD

Tuesday, Jul 17, 2012

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.

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Leadership Update: Announcing our 2011 Annual Report

Wednesday, Jun 20, 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.

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Webinar Update: Social Security Disability and the Compassionate Allowance Program in the Adult Congenital Heart Community, June 20

Wednesday, May 30, 2012

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.

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Share Your Memento with ACHA!

Tuesday, May 22, 2012

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!

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