We are thrilled to share our updated website today, which has been refreshed with usability and simplicity in mind for our supporters and the greater congenital heart disease (CHD) community. We know that people across the country are accessing our website for a wealth of information, but especially in some key areas—such as defect-specific educational resources and the ACHD Clinic Directory. With that in mind, we have made these areas and other priority program content the core of our homepage, and easily accessible with fewer clicks.
A Q&A with Team Captain Kelly DiMaggio, and Dr. Stacy Fisher, Director of the ACHD Program at the University of Maryland Medical System.
(The Maryland ACHD Walkers are the largest medical center team to walk for 1 in 100 nationwide. In 2019, they raised more than $11,000.)
The Adult Congenital Heart Association is committed to creating a culture where patients and families across the country are empowered to communicate with Board and staff leadership in a collaborative effort to promote understanding and outcomes. ACHA's Patient & Family Advisory Board (PFAB) ensures the existence of an effective organizational mechanism for receiving and responding to diverse consumer perspectives on an ongoing basis.
ACHA is pleased to announce the appointment of Wayne Franklin, MD, and Christy Sillman, NP, as Honorary Co-Chairs of our 9th National Conference. The conference will take place June 23-25, 2022. Details and registration are available here.
ACHA has always made sure to let our community know how important research is in improving the quality of care and the quality of life for adults with congenital heart disease (CHD). It's a crucial part of our mission.
And as we announced in 2018, research is a part of our strategic plan with this overall goal: Fund research to improve the lives of CHD patients and future generations in partnership with medical professionals.
This year has undoubtedly been challenging and required a great deal of adaptability across all industries. The non-profit sector and the Adult Congenital Heart Association have been no different. Events have needed to be cancelled or rescheduled and fundraising efforts have been greatly impacted. We found ourselves needing to reimagine much of our work to fit into this new virtual space we are living in due to the COVID-19 pandemic.
Students are beginning to start or return to college. What this looks like differs for every institution of higher learning. ACHA shares some tips for reducing exposure if you are returning to campus, as well as tips for working with disability services to get accommodations as an adult with congenital heart disease (ACHD).
How did you learn about ACHA?
I was born in 1974 with single ventricle, transposition of the great arteries and coarctation of the aorta. I had four surgeries during my childhood, which included the Fontan procedure in 1985. I had done remarkably well until early in 2013 when my wife, Jacqui, had voiced her concerns that she had seen a decline in my health.