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.
Applications Now Available for ACHA's 2024 Research Grants
Since launching our emerging research program in 2019, ACHA has invested more than half a million dollars to fund 18 investigations at adult congenital heart disease (ACHD) centers across the country. We are excited to build upon our commitment to unlocking new discoveries for our patient population, and are thrilled to announce today that grant applications for ACHA’s 2024 Research Awards are now available!
ACHA’s 2024 research program will continue to accept applications for early investigation and pilot studies for all ACHD disciplines. We are proud to once again offer the Meil Family Foundation Research Award for Neurocognitive Studies, which debuted in 2022, as well as the Pulmonary Vascular Disease Research Award, funded by a corporate sponsorship from Johnson & Johnson, which debuted in 2023.
Adult Congenital Heart Association Advocates on Capitol Hill
ACHA leadership requests support for the Congenital Heart Futures Reauthorization Act of 2024
The Adult Congenital Heart Association’s board of directors and staff closed out Heart Month by visiting Capitol Hill February 29 to ask lawmakers to sign on as co-sponsors to the Congenital Heart Futures Reauthorization Act of 2024. This critical legislation ensures continued funding of up to $10 million annually through federal fiscal year 2029 to advance congenital heart disease (CHD) research, surveillance, and awareness programs.
ACHA’s Patient and Advisory Board Commemorate CHD Awareness Week Around the Country
During Heart Month and especially Congenital Heart Disease (CHD) Awareness Week, we want to thank all of our volunteers and supporters for so diligently spreading awareness about both ACHA and the importance of lifelong care for adults with CHD.
Specifically, our Patient and Family Advisory Board (PFAB) has joined together to write and submit proclamation requests that have resulted in CHD Awareness Week, February 7-14, being officially recognized by legislators in U.S. cities, states and counties.
Senate Introduces the Congenital Heart Futures Reauthorization Act of 2024 to Reauthorize CHD Surveillance Research Funding and Address ACHD Workforce Shortages
The Adult Congenital Heart Association Thanks Bipartisan Legislators for Work to Reauthorize CHD Programs and Address Workforce Needs
Earlier today, U.S. Senators Dick Durbin (D-IL) and Todd Young (R-IN) introduced the Congenital Heart Futures Reauthorization Act of 2024, joining their colleagues, Congressman Gus Bilirakis (R-FL) and Adam Schiff (D-CA) in the U.S. House of Representatives, who last week introduced the bipartisan bill in that chamber.