ACHA National Conference Planning Team Update
We hope you have saved the date for ACHA’s 7th National Conference at the Holiday Inn Chicago Mart Plaza! We look forward to hosting patients, family members, medical providers and researchers from September 5-7, 2014, for this unique opportunity that allows the entire ACHD community to come together to interact, learn and build hope for the future.
ACHA Announces Interim Director
The Adult Congenital Heart Association welcomes new interim executive director Gail Ober, MSW, LSW, to the organization. Gail brings to ACHA extensive experience in designing and leading organizational development and transformations, including growth, alliances and mergers.
ACHA Leadership Announcement
From Amy Verstappen:
It is with both sadness and pride that I write today to announce my departure from my job as ACHA’s President and CEO. My 52-year-old “backwards heart” has made clear that meeting the tremendous time and energy demands of running ACHA is no longer possible. As I make this life change, I am comforted and inspired by the many ACHA members I have watched negotiate increasing cardiac challenges while living lives full of contentment, activity, and satisfaction. I look forward to this next life stage, in which I can continue to advocate for a better future for congenital heart patients, but with fewer hours, less stress, and more relaxation.
ACHA Announces Medical Fellowship for Specialty Training
The Adult Congenital Heart Association (ACHA), a non-profit organization dedicated to improving the long-term health of individuals born with heart defects, announces the creation of the ACHA Actelion Fellowship Award to increase the availability of specialized congenital heart care.
The fellowship, funded by Actelion Pharmaceuticals US, Inc., will offer training awards to two institutions in the United States with a commitment to high-quality adult congenital heart disease (ACHD) care. These awards will be used to provide two years of special training for cardiologists wishing to specialize in caring for adults with CHD.
Leadership Update: Addressing the Crisis in Access to ACHD Care
Since 1998, ACHA has spoken out about the crisis in access to ACHD care. Although there are more than 3,000 pediatric cardiologists nationwide, there are currently no more than 100 specially-trained ACHD cardiologists, despite the fact that care guidelines jointly published by the American College of Cardiology and the American Heart Association state that every person born with complex congenital heart disease should receive lifelong care from CHD specialists. Most survivors of complex congenital heart disease have either dropped from cardiac care or are being cared for by cardiologists without training in their special needs.
Leadership Update: It's All About Our Volunteers
Despite the heat, this summer ACHA volunteers all over the country are working hard to make a better future for every person born with a heart defect. ACHA volunteers come in all shapes and sizes, with a wide variety of passions and skills. Some patients and their families serve as Heart to Heart Ambassadors, reaching out personally to assist individuals struggling with CHD. Some speak out in their communities to patients, families, lawmakers, and the press, getting the word out about the unmet needs of CHD survivors. Thousands of volunteers around the country participate in Congenital Heart Walks, whether by serving as chairs, team leaders, or by walking to show their support. In addition to those personally affected by CHD, many healthcare professionals also volunteer, as advocates, medical reviewers, researchers, community leaders, and members of our Medical Advisory Board. Virtually everything ACHA does relies on the generosity of our volunteer community.
Updated Seventh Edition ACHD Travel Directory Now Available
It's that time of year—we recently released our newly updated Seventh Edition ACHD Travel Directory.
The directories are free for ACHA members! If you would like one of these resources for your personal use, simply e-mail orders@achaheart.org with your name and mailing address. For a printer-friendly PDF, click here.
Leadership Update: Announcing our 2012 Annual Report
In the last few weeks, I have had the pleasure of spending time with ACHA’s supporters at events in New York, Portland, Long Island, and Chicago. At every venue, ACHA members want to know the same three things: How is ACHA benefiting the patients and families we serve? What specific actions is ACHA taking to help CHD patients live longer, healthier lives? And finally, how is ACHA making sure that it uses funds responsibly, effectively, and efficiently so that every donation has maximum positive impact for the congenital heart community?
Leadership Update: What Does it Mean to Live With CHD?
What does it mean to live with congenital heart disease? This is a question that ACHA members answer every day. There are more than a million answers to this question, since there are now over one million adults living with CHD, each one navigating their unique journey living with their heart.
Remembering George Warren, ACHA Board Member
The ACHA community was deeply saddened by the loss of longtime ACHA board member Dr. George H. Warren on April 29, 2013. George was born in 1947 with tetralogy of Fallot, and underwent heart surgery in 1955 and 1964 for his defect. He graduated from Harvard College in 1969, and received his MD from Temple Medical School in 1975. For more than 30 years he worked as a pathologist at the University of Colorado and the Rose Medical Center.