Adult Congenital Heart Association

Midwest CHD community, have you registered for the Heart to Heart Regional Conference in Kansas City yet? We hope you’ll join us on November 9 at the Diamond Conference Center for a great program to learn the latest information about congenital heart disease. You’ll also get to know ACHA (like our team member Christine Wenzl, Midwest Regional Engagement Specialist – that’s her at the left in this photo with CHD patients and their loved ones) and your fellow ACHDers and supporters! To learn more and register, visit https://ow.ly/QMTI50Tgu2J. We can’t wait to see you there!

Today is World Heart Day. Please celebrate with ACHA by spreading congenital heart disease (CHD) awareness and learning more about lifelong care for CHD at www.achaheart.org. #WorldHeartDay2024

CHI experts are exploring different facets of life with CHD. Our sub-study on maternal health aims to empower patients to shape future maternal care, with the goal of reducing pregnancy-related stress and anxiety for people with CHD. More details to come in our annual report! Adult Congenital Heart Association

GREAT NEWS: The Congenital Heart Futures Reauthorization Act (S. 3757) passed unanimously in a late-night vote in the U.S. Senate. Thank you to our champions Senators Dick Durbin and Todd Young and Representative Gus Bilirakis (speaking here in this video about the bill) for making the dream of $50 million in funding for CHD research over 5 years a reality. This bipartisan legislation will authorize continued funding for congenital heart disease (CHD) research and surveillance programs at the Centers for Disease Control and Prevention (CDC). This will be the first time this legislation will directly address the critical shortage of certified ACHD care providers to create a workforce for the future. Thank you to every advocate who has participated in this campaign. You made it happen. Next up: CHFRA goes to the president’s desk. 

We’ve cleared a major hurdle today with passage of the Congenital Heart Futures Reauthorization Act (H.R. 7189) in the U.S. House! Thank you, Representatives Bilirakis, Schiff, Soto, Carter, Salazar, Cardenas and Senators Durbin, Young, Casey, Smith, and Gillibrand, for leading the charge, and to our partners The Children's Heart Foundation, Conquering CHD, and Mended Little Hearts National Organization for making this possible. This bipartisan legislation will authorize continued funding for congenital heart disease (CHD) research and surveillance programs at the Centers for Disease Control and Prevention (CDC). This will be the first time this legislation will directly address the critical shortage of certified ACHD care providers to create a workforce for the future. “We’re thankful for the ongoing commitment of our House and Senate champions to people living with congenital heart disease. Passage in the U.S. House is a key milestone in our yearslong campaign to grow research, data collection, and awareness of CHD through CHFRA’s passage,” said Mark Roeder, President and CEO of the Adult Congenital Heart Association. “This legislation furthers our mission and drives advancements for adults with CHD. The time is now for us to all work together to get the bill across the finish line to the Senate.” Thank you to every advocate who has participated in this campaign — though our work isn’t over yet. Ask your senators to prioritize CHFRA’s passage before the end of the year: https://bit.ly/4efYgwo

Esperamos que se una a ACHA para nuestro próximo seminario web, que se llevará a cabo en español el 9 de octubre. El Dr. Fernando Baraona Reyes será el presentador y hablará sobre cómo vivir con insuficiencia cardíaca debido a cardiopatía congénita. Para obtener más información y registrarse, por favor visite: https://bit.ly/3TiVSwx We hope you will join ACHA for our next webinar on October 9, given entirely in Spanish and to commemorate #HispanicHeritageMonth. Our presenter, Dr. Fernando Baraona Reyes, will talk about living with heart failure from congenital heart disease. To learn more and register: https://bit.ly/3TiVSwx #HispanicHeritageMonth2024

Thank you to the more than 120 attendees, speakers, volunteers and sponsors who joined ACHA at the Heart to Heart Regional Conference today in Houston! We had a wonderful day presenting the latest educational information about CHD and building connections with one another and the CHD community.

In collaboration with Children’s National Hospital and ACHA Medical Advisory Board member Anitha John, MD, PhD, we are excited to share that they have recently received funding from PCORI to discover how adults with congenital heart disease and neurodevelopmental disabilities can participate in research. The work stems from the Congenital Heart Initiative, the first patient-powered registry for adults with congenital heart disease (ACHD). As Dr. John and her team launched the study, they realized that a significant portion of the ACHD community was excluded due to the inability to complete surveys independently. As a result, in collaboration with ACHA, Dr. John applied for funding to figure this problem out! ACHA and Dr. John are now looking for interested partners (patients, caretakers, researchers, clinicians, etc) who can offer insight on one of our study committees. If you are interested in hearing more, please complete the following survey: https://lnkd.in/emqqGnD7

We are excited to embark on a new project that aims to make the CHI more accessible to people with neurodevelopmental disabilities (NDD). We can’t wait to dive in and share insights as we go! Adult Congenital Heart Association

The application period for the ACHA Board of Directors is open. Through October 25, we invite you to visit https://ow.ly/neNu50TqmWm to learn more about the roles and responsibilities of our Board, and apply if you feel you're a good fit!