Noted Author to Attend Congenital Heart Lobby Day on March 1
“Immortal Bird: A Family Memoir” author Doron Weber will join the Adult Congenital Heart Association and Mended Little Hearts members on Capitol Hill on March 1, 2010, to lobby for needed research and surveillance for congenital heart disease.
Leadership Update: Happy Valentine's Day!
February is a special month for the congenital heart community, as we promote congenital heart awareness and remind the world that for some of us, hearts are more than Valentine's Day decor.
ACHA Receives 2 Grants to Support Programs for ACHD Medical Providers and Patients
We are excited to announce that Actelion Pharmaceuticals US, Inc. has awarded ACHA with two grants totaling $200,000 to support 2012 program activities.
National Congenital Heart Lobby Day: Join Us!
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.
Webinar Update: Post Mustard and Senning in the ACHD Patient, Jan. 17
ACHA announces its newest webinar, "Post Mustard and Senning in the Adult Congenital Heart Patient," presented by Gary D. Webb, MD, on Tuesday, Jan. 17, 2012, from 7-8 p.m. EST. The webinar will cover the four main issues that might show up after these procedures. Dr. Webb will also discuss why close observation by an ACHD expert is important and share steps you can to take to 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.
Webinar Update: Eisenmenger Syndrome in the ACHD Patient, Jan. 23
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.
$2 Million Directed to the CDC for Congenital Heart Disease Surveillance
In the budget reconciliation bill, passed by both the House and Senate today, $2 million was appropriated to the Centers for Disease Control and Prevention (CDC) to address epidemiological and longitudinal data on individuals of all ages with congenital heart disease.
Leadership Update: ACHA's New Strategic Plan
As 2011 comes to a close, we here at ACHA are thinking not only about 2012, but also about ACHA’s future. In order to ensure that ACHA continues to provide vital programming to our members, we recently participated in a strategic planning process that required ACHA’s staff and leaders to think long and hard about ACHA’s work and mission moving forward. Out of this process came ACHA’s 2012-2014 Strategic Plan, and I am delighted to share a brief summary of our new goals and strategies.
Medtronic Foundation Donates to ACHA on Behalf of Global Heroes
The Medtronic Foundation recently donated $1,000 to the Adult Congenital Heart Association on behalf of Medtronic Global Hero Mike Nall, who supports heart-related missions. Nall has a stent to treat coronary artery disease and was chosen by the Medtronic Twin Cities Marathon to be part of its 2011 class of 25 Global Heroes, after a worldwide search for runners whose lives have been improved with the help of medical devices.
Parental Knowledge Study Findings Published in Pediatrics
Findings from ACHA’s Parental Knowledge Study were published this week in the online version of Pediatrics, the official journal of the American Academy of Pediatrics. Click here for the abstract of the article, "Parental Knowledge Regarding Lifelong Congenital Cardiac Care."