News

“I never knew there was anyone else out there like me.”

If I had a nickel for every time I have heard an adult congenital heart survivor say this, I could fly to Tahiti and back. Every day, congenital heart patients tell us that meeting others who share their struggles transforms their lives. These “meetings” might be in person, through our Facebook page, on our Discussion Forum, or through an ACHA Blog post. Because of the large number of defects, treatments, and health impacts, each member story is unique. Each offers a different window to the wide range of experience involved in having a heart defect.

ACHA announces its newest webinar, "It's All in the Pump: Managing and Treating Heart Failure in the ACHD Patient," presented by Karen Stout, MD, on Thursday, November 15, 2012, from 7-8 p.m. EST. The webinar will cover which medications and devices are options for treating heart failure and advanced heart failure in adults with CHD. To register, click here.

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

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.

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.

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.

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!

Our goal for Congenital Heart Lobby Day 2012 on March 1, 2012, is to meet with our legislators and celebrate our successes. However, we realize this is only the beginning. We need to motivate our members of Congress to learn more and do more. We will be asking them to continue funding the CDC so we can learn more about prevalence, barriers to effective care, survival outcomes and neurocognitive outcomes, and to increase funding to the National Institutes of Health (NIH) for CHD research. New this year, we will be asking our members of the House to join the Congenital Heart Caucus. Representatives can join this group, chaired by Congressman Gus Bilirakis, to show their support and receive continued information about issues related to CHD, including what the federal government can do to save money and save lives.

Register for Lobby Day by clicking here.

ACHA announces its newest webinar, "Eisenmenger Syndrome in the Adult Congenital Heart Patient," presented by Curt J. Daniels, MD, FACC, on Monday, Jan. 23, 2012, from 7-8 p.m. EST. The webinar will cover what causes Eisenmenger syndrome and how it is diagnosed, as well as available treatments and steps you can take to avoid complications and lead as productive a life as possible. To register, click here.

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

ACHA announces its newest webinar, "Managing Holiday Stress," presented by Jamie Jackson, PhD, on Thursday, Nov. 10, 2011, from 7-8 p.m. EST. The webinar will cover stress, simple ways to take care of yourself and manage your stress, and how stress management helps you to stay healthy while improving your enjoyment of the holidays. To register, click here.

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

ACHA announces its newest webinar, "Patient-Centered Care and Outcomes," presented by ACHA Research Manager Ann Gianola on Thursday, Oct. 27, 2011, from 7-8 p.m. EDT. The webinar will cover patient-centered care and help you understand what you can do to play a major role in planning your health care. To register, click here.

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