Congenital Heart Initiative Research Opportunities
ACHA has partnered with the Congenital Heart Initiative (CHI), the first patient-powered registry for adults with congenital heart disease (ACHD), since its inception. There are currently two opportunities for you to share feedback and continue to help ACHA and the CHI start to better understand some of the barriers the patients and families face when it comes to participation in research.
ACHA Commemorates CHD Awareness Week Around the Country
During Heart Month, and especially during Congenital Heart Disease (CHD) Awareness Week from February 7-14, we extend our heartfelt gratitude to our incredible volunteers and supporters. Your dedication to raising awareness about ACHA and the critical need for lifelong care for adults with CHD makes a meaningful impact.
Specifically, our Patient and Family Advisory Board (PFAB) and members of the ACHA team have joined together to write and submit proclamation requests that have resulted in CHD Awareness Week being officially recognized by legislators in U.S. cities, states and counties.
ACHA Seeking Opinions on Supporting Adults with CHD
As ACHA begins to develop our next strategic plan, we need to know what our supporters think about our mission-focused activities so that we can provide the services that best support ACHA members and the overall adult CHD community.
In this year's Strategic Planning Survey, we are asking about why you engage with ACHA, which programs you think are most important, and more. New this year, there are surveys for both of our core audiences: patients and family members and medical providers.
2025 Walk for 1 in 100 Nationwide T-Shirt Design Contest Opens
Review the official rules for our 2025 T-Shirt Design Contest!
Board of Directors 2024 Recruitment Period Opens
The Adult Congenital Heart Association is currently recruiting highly-qualified candidates to serve on the ACHA Board of Directors (BOD). To learn more about the roles, responsibilities, and qualifications for our BOD, please click here.
ACHA Welcomes Erin Walsh-Beguin to the Board of Directors
The Adult Congenital Heart Association (ACHA) – whose mission is to empower the congenital heart disease (CHD) community by advancing access to resources and specialized care that improve patient-centered outcomes – has appointed Erin Walsh-Beguin to its Board of Directors.
2024 ACHA Volunteer Award Winners
During National Volunteer Month in April, we asked members of the ACHA community to submit nominations to recognize and celebrate those who have demonstrated exceptional enthusiasm and commitment to our mission. Once all nominees were submitted, the ACHA Emeritus Board reviewed the nominations and selected the winners.
We are thrilled to share our 2024 ACHA Volunteer Award winners today! This year’s recipients are Ashlyn Arthur and Drezden Plotkin, both of whom have made a strong impact on the ACHA and CHD communities over the last year. In fact, they both had multiple nominations. You can learn more about Ashlyn and Drezden below.
ACHA's Patient & Family Advisory Board Recruitment Opens
Thank you for your interest in joining the Adult Congenital Heart Association (ACHA) Patient & Family Advisory Board (PFAB).
ACHA 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. The PFAB ensures the existence of an effective organizational mechanism for receiving and responding to diverse consumer perspectives on an ongoing basis. Members of the PFAB provide support and advice on current and proposed ACHA initiatives and help to ensure the effective delivery of those initiatives in their local communities. The PFAB functions as a standing advisory body to the ACHA Board of Directors (BOD).
ACHA Update: Neurocognitive Research Conference
Thanks to generous support from the Meil Family Foundation, ACHA offers an annual research grant specifically focused on better understanding the lifelong neurodevelopmental impacts of living with congenital heart disease. During the last grant cycle, the Meil Family Foundation Research Award for Neurocognitive Studies was presented to Adam Cassidy, PhD, LP, from the Mayo Clinic, and Michelle Gurvitz, MD, from Boston Children's Hospital, who submitted a grant application to bring a large group of medical providers—as well as patients—together to discuss the neurocognitive and psychosocial issues that may affect those diagnosed with CHD.
The Meil Family Foundation Neurocognitive Research Conference was held on April 4-5, 2024, in Atlanta, GA. In total, there were 25 participants who are patients, neuropsychologists, ACHD cardiologists, neurologists, neuroimaging and cardiac neurodevelopmental providers, psychiatrists, computational neuroscientists, ACHD nurses, ACHD surgeons, ACHA peer mentors and ACHA Patient Advisory Board members.
ACHA Research Update: Fontan-Associated Liver Disease
ACHA has been advancing research for adult congenital heart disease (ACHD) patients since the ACHA Research Program started in 2019. ACHA is the only national nonprofit organization focusing solely on research for adult CHD patients now and in the future. The researchers who were awarded research grants through the ACHA Research Program are hoping to improve the landscape of treatment options, innovative surgery/intervention options, medications, and overall neurocognitive health of all ACHD patients.
ACHA has awarded grants in three main categories: neurocognitive research, pulmonary vascular research and general research focused on ACHD. Throughout 2024, we will be spotlighting researchers and the research that has been conducted since 2019 so that we can continue to share the results that directly affect those with ACHD.