Adults with Congenital Heart Defects on The Hill

Michael Pernick, 26, was born with tetralogy of Fallot and has had three surgeries, most recently a valve replacement in 2011. Several months after his valve replacement he was hospitalized with an infection in his heart, and, while recovering, learned about Adult Congenital Heart Association (ACHA) and began to get involved in the community. Today, Michael is a Heart-to-Heart Ambassador with ACHA, and he also writes for the ACHA blog and participates in the annual congenital heart lobby day. Michael grew up on Long Island and spent several years managing political campaigns and issue advocacy campaigns in New York, Connecticut, and Boston. He is currently in his final year of law school at New York University and looks forward to continuing to put his political and legal background to good use supporting the CHD community.

Jon Ritchings, Jr., is a 43-year-old father who was born with pulmonary atresia and a hypoplastic right ventricle. He has had 3 open-heart surgeries — the last one ending a decade of living in right heart failure. Jon lives with an implantable cardioverter defibrillator (or ICD) to control ventricular tachycardia and he is 100 percent paced. He currently lives with no restrictions and enjoys spending his free time hiking, kayaking, and playing in two ukulele groups. Jon worked for 20 years in retail. After his last surgery in 2012, he decided to switch gears and go back to school full time. With a lifetime of experience advocating for himself, he hopes one day to become a patient advocate to help other people navigate the medical community. He currently writes a bi-monthly blog for the ACHA.

Links Mentioned in our Show:

Community Tool Box: Chapter 33, Section 7: Lobbying Decisionmakers

Adult Congenital Heart Association