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.
From left to right, ACHA President and CEO Mark Roeder, Rick Puder (Senior Ambassador), Ken Woodhouse (Patient & Family Advisory Board), Drezden Plotkin (Patient & Family Advisory Board), Katie Brown (Senior Ambassador), ACHA Senior Director of Medical Affairs Danielle Hile
Overall, the three objectives of the conference served to guide the participants’ work in person and that will continue in the future:
- To facilitate the formation of 3 working groups (Genetics & Brain Health, Neuropsychological & Psychological Interventions, and Outcomes), each tasked with exploring a key domain necessary for advancing neuropsychological and psychosocial research among adults with CHD.
- To leverage the expertise of the 3 working groups to identify critical gaps in knowledge and propose an agenda for the next decade of neuropsychological and psychosocial research in adults with CHD.
- To leverage the expertise of the conference participants to develop recommendations for the neuropsychological and psychosocial evaluation and management of adults with CHD.
The three working groups will continue to meet and formulate recommendations in the months ahead, and we look forward to sharing those recommendations once they are published. In addition, ACHA is the Preconference Workshop sponsor for the Cardiac Neurodevelopmental Outcome Collaborative (CNOC) 2024 Annual Scientific Sessions to be held in September in St. Louis, MO. During the workshop, titled Unraveling the Heart-Brain Connection: Insights into the Care of Adults with Congenital Heart Disease, attendees from the recent ACHA Neurocognitive Research Conference will share their insights and recommendations as well.
You can find additional resources about neurocognitive issues in adults with CHD by clicking here.
Research projects like this are only made possible by our Research Fund donors. To learn more about how you can support our Research Program, click here.
Thank you to our generous donors and corporate funders who have already invested in ACHA’s Research Fund and our 2024 funding cycle including the Meil Family Foundation, Johnson & Johnson, Anne Stapleton Reilly, Brad’s Heart of a Jayhawk Research Fund, Dale Amorosia Heart Fund, Heithoff Charitable Fund, Jim Wong Memorial Fund, Joseph E. Hebert, and Susan Timmins.