On Wednesday, May 4, ACHA and The Mended Hearts, Inc. teamed up to host a Virtual Advocacy Day. Passionate volunteers including patients, family members, and medical providers representing both organizations met with legislators from states across the country. In total, the event had over 260 registrants. Upon completion, 185 meetings took place, which included meetings with legislative staff members and 10 Members of Congress from 32 states.
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 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).
In honor of Volunteer Month, we're sharing Jennifer Tripucka's recent Heart Happenings Spotlight. She's a member of our community who contributes in numerous ways, including blogging and fundraising on her social media accounts. Learn more about Jennifer and her support of ACHA in this Q&A.
After much analysis and discussion, ACHA has made the final decision to transition our ACHA 9th National Conference to a virtual event. We thank you for remaining patient as we rescheduled our event twice throughout the last two years with consideration of the COVID-19 pandemic and the safety of our attendees at the forefront.
The two years of postponements have also allowed us to reflect on other considerations beyond the pandemic that have impacted this decision as well. The simple truth is that much has changed – within ACHA and within our country – since 2018 when we first announced this conference and started planning. While we know the National Conference has been a staple of ACHA that has made our organization unique from its earliest days, there are now many other programs at ACHA that make us one of a kind as well and enable us to reach more of the CHD population in an effective manner.
Since launching our emerging research program in 2019, ACHA has invested $300,000 to fund 10 investigations at 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 2022 Research Awards are now available!
As we announced in 2018, research is a part of our strategic plan with this overall goal: Fund research to improve the lives of CHD patients and future generations in partnership with medical professionals. We remain committed to funding adult CHD research and are dedicated to providing research funds in 2022 and beyond so that we can continue to support the critical research for all adult CHD patients and their family members.
The Adult Congenital Heart Association (ACHA) has announced the newest additions to the organization’s Medical Advisory Board (MAB), joining dozens of other medical providers specializing in the field of adult congenital heart disease (ACHD) care. ACHA MAB members play a crucial role in offering expert opinions on research and medical developments in ACHD and the needs of the nearly 2 million adults with CHD in the United States to assure that organizational policies meet the highest standards of scientific need and accuracy.
For the second year in a row, we are proud to announce the ACHA annual award recipients! Nominees in the following four categories were submitted by ACHA staff and board members: Fundraiser of the Year, Rookie of the Year, Influencer of the Year, and Organizational Partner of the Year. Once all nominees were submitted, the ACHA Emeritus Board reviewed the nominations and chose the winner for each category.
As 2021 winds down, we reflect back on the accomplishments of the ACHA ACHD Accreditation Program this year. Despite the pandemic, ACHA has continued to move programs forward in the process through virtual site visits and providing valuable feedback to further enhance patient care. We are thrilled to report there are currently 44 programs caring for more than 77,000 patients in a total of 27 states and counting.
Due to successes in treating congenital heart disease (CHD) in childhood, more children with CHD are surviving to adulthood—resulting in more adults with CHD than children in the United States. The number of adults with CHD continues to grow every year.
From its inception more than 20 years ago, the Adult Congenital Heart Association (ACHA) knew our members struggled to find appropriate cardiology care. In 2001, ACHA first endorsed the creation of specialized adult congenital heart disease (ACHD) training.
We mourn the recent loss of Gary D. Webb, MD, an internationally recognized leader in adult congenital heart disease (ACHD), and avid ACHA supporter and champion for the patient voice. Dr. Webb provided leadership and advice for more than two decades as a valued member of both the ACHA Medical Advisory Board and ACHA Emeritus Medical Advisory Board.