Discussion Forum
A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.

2011 Sixth National ACHA Conference

Thank you to All heart defect patients, their friends and families, and ACHD health care professionals who attended ACHA’s Sixth National Conference! This event brought together the adult congenital heart community to share the best in ACHD research and resources, celebrate our accomplishments and plan for our future.

Click here for available conference presentation slides.

April 28, 2011, to May 1, 2011, marked ACHA’s Sixth National Conference, held at the Los Angeles Airport Marriott. The conference was jointly sponsored/co-provided by the American College of Cardiology Foundation and co-hosted by ACHA and the Ahmanson/UCLA Adult Congenital Heart Disease Center. CME and CNE credits were provided through the American College of Cardiology Foundation.

We could not have asked for better weather or a more stimulating and fun environment. The conference drew nearly 400 participants from more than 32 states, the District of Columbia and Canada. Of these, about 250 were patient or family members and 150 registered for the professional/research programming. Attending medical professionals and faculty brought skill, talent, and experience, while patient/family members brought eagerness to connect and to learn. It was a perfect combination!

The attendees were welcomed Thursday evening by eager registration volunteers and a host of hospitality activities, including a screening and discussion of the documentary “Open Hearted,” presented by the filmmaker Marc Ostrick. Other activities included ice breakers, games, and lots of good food and conversation.

Conference sessions began early Friday morning for the patient and family members, as well as the professionals. Both groups attended the plenary sessions. The opening session focused on “ACHD: Past, Present and Future” and was followed in the afternoon by an “ACHD/AARCC Research Update.” The closing plenary on Saturday afternoon addressed “Bridging the Gap between ACHD Patients and Providers.” ACHD members spoke from the heart about their journeys, as well as engaged in a dialogue with a panel of health care professionals about the differences each brought to the “doctor’s” appointment. The conversations did not end with the presentations but continued during breaks and meals.

Disease/syndrome specific break-out sessions in the patient/family portion of the conference were well-attended and allowed the attendees to interact and ask questions of ACHD specialists and to form relationships with others living with the same or similar defect or syndrome. Additional break-out sessions allowed the attendees the access to experts in areas such as rhythm issues, pulmonary hypertension, pregnancy, exercise, disability, and catheter-based interventions. Other whole group presentations during the weekend included “Managing Your Medical Needs: What Every Patient Should Know” and “Beyond the Doctor’s Visit: The Nuts and Bolts of Self-Management.” Clubhouse sessions, which were co-facilitated by a Cardiac Care Associate and a patient, allowed patient and family members to interact in an informal and interactive way on a variety of topics and were a hit of the conference.

The patient/family sessions also included opportunities to learn about ACHA. An optional breakfast meeting on Saturday morning highlighted “Making a Difference in Your Community: Volunteer Opportunities at ACHA.” Sunday morning programming concluded with an ACHA update about what's new in patient/family programs, professional programs, advocacy and policy.

The professional sessions began on Friday morning with a focus on the “The Misunderstood, Often Forgotten Right Ventricle,” followed by case sharing in complex adult congenital heart care. The Professional content concluded on Saturday morning with “ACHD & Atrial Arrhythmias – The Hidden Epidemic.”

The Research Symposium opened on Friday afternoon with presentations on “Final Common Pathways: Key Questions about Heart Failure” and concluded on Saturday afternoon with lectures on the “Implications of Advanced Therapies and Interventions in ACHD Patients with Pulmonary Hypertension.”

The ACHD Research Symposium included a moderated poster session on Friday afternoon, where researchers from around the country presented research on access to and delivery of ACHD care, exercise capacity and functional ability, aging, contraception, and surgical interventions. Thirteen research projects were chosen from a competitive field of abstract submissions to be presented at the poster session. From these 13 presentations, a research award was presented to Dr. Jeremy Nicolarsen for his work on Bicuspid Aortic Valve in African Americans is Associated with Smaller Aortic Dimensions and Requires Less Surgical Correction. Congratulations to all research presenters!

In addition to the formal conference sessions, opportunities for social interaction were available throughout the weekend. Attendees had the option of going to the 3rd Street Promenade in Santa Monica or taking a tour of Hollywood on Friday evening. The Gala and Raffle on Saturday night were not to be missed. The evening was highlighted by Dr. Ariane Marelli’s keynote address title “Care of the Adult with CHD: Putting Science Behind Success.” Congratulations to Dr. Marelli and Dr. Jack Lewin, ACC President, on receiving the ACHA Heart Heroes Leadership Award. Recognition was also given to outgoing ACHA Board Members and to the volunteers whose tireless work made the conference possible. A dinner buffet and dancing to the music of DJ Kirby was enjoyed by all. Special entertainment by comedian Cathy Lewis and juggler Daniel Betlejewski capped off the evening.

Following closing comments on Sunday, those who didn’t have to catch an early flight could chose to attend Beach Day at Manhattan Beach (with lunch donated by Whole Foods) or a movie and popcorn in the Hospitality Room. Whichever the attendees chose, it was the perfect end to a perfect weekend!

Thanks to our planning committee; their hard work made this event successful. Committee members included Conference Co-Chairs Dr. John Child and Dr. Jamil Aboulhosn; Professional Co-Chairs Dr. Daniel Murphy and Dr. Child; Research Symposium Co-Chairs Dr. Aboulhosn and Dr. Craig Broberg; and Patient/Family Co-Chairs Pam Miner, NP, and Linda Houser, NP. In addition, thanks to our sponsors (please see below).

—Paula Milller
Membership Services Manager

Available Conference Presentations:

Cardiac Pacing, Implantable Defibrillators and Resynchronisationin Patients with Congenital Heart Disease: What’s New in Devices? (Louise Harris, MD): Download PDF

Coping with Anxiety & Depression for ACHD Patients (Adrienne H. Kovacs, PhD, CPsych): Download PDF

Distorted Electro-Mechanical Relationships: The Vicious Cycle of Arrhythmia and Myocardial Dysfunction (Louise Harris, MD): Download PDF

Fontan Conversion with Arrhythmia Surgery: Who, When and How Effective? (Barbara J. Deal, MD): Download PDF

Health Insurance with Adult Congenital Heart Disease (Paula Miller): Download PDF

Heart and Mind Panel: Anxiety & Depression (Adrienne H. Kovacs, PhD, CPsych): Download PDF

Heart Rhythm Issues (James C. Perry, MD): Download PDF

The History of ACHD (Roberta Williams, MD): Download PDF

New Treatment for Pulmonary Hypertension (Michael D. McGoon, MD): Download PDF

Pushing Yourself While Protecting Your Heart: ACHD and Athletics (Disty Pearson, PA-C): Download PDF

Recognition of IART or Atypical Flutter (James C. Perry, MD): Download PDF

Social Security Disability Evaluation for Adults with Congenital Heart Defects (Paul Quick, MD): Download PDF

Taking Charge of your Medical Records (Cynthia Solomon): Download PDF

For more information:

Click here for patient/family sessions
Click here for professional sessions

For Patient/Family Attendees:

Click here for the patient/family brochure.

Our patient/family portion of the conference is a great chance for people with CHD and everyone involved in their care and support to come together to learn from each other and the country’s top ACHD specialists. Welcome activities will start off the evening of Thursday, April 28, and there will be lots of opportunities throughout the event to make new friends and share stories. And be sure to stay until Sunday, May 1, when we’ll have a beach day that will include families and children affected by CHD from throughout the area!

For Professional Attendees

Click here for the professionals brochure.

The healthcare professional conference agenda includes the best cutting-edge CHD information presented in both the research symposium and professional sessions, specifically for those healthcare professionals working with CHD. CME and CEU credits will be available and travel grants will be awarded to those submitting winning abstracts. This event is targeted to cardiologists and midlevel providers; CME/CE accreditation is pending. 

Thank you to our sponsors:

Diamond level partner:




Adolescent and Adult
Congenital Heart
Disease Program

Center for Adult Congenital
Heart Disease, project of
Community Initiatives