Adult Congenital Heart Association Celebrates 20th Anniversary

Philadelphia, Pa., Feb. 22, 2018 -- The Adult Congenital Heart Association (ACHA) is proud to announce its 20th anniversary during Heart Month, in recognition of two decades of advocating for lifelong care for those with congenital heart disease (CHD). Throughout the year, ACHA will celebrate the significant strides that have been achieved to enable individuals born with this most common birth defect—diagnosed in one in 100 births—to live happy, healthy adult lives.

ACHA is the only non-profit in the country dedicated solely to the unique social, educational and medical needs of the 1.4 million adults in the U.S. with one of the many different types of congenital heart defects. Karen Klein McNulty and two friends who were also living with CHD—Anthony Cordaro, Jr. and Bonnie Paulsen—founded ACHA in her parents’ living room as they sought a shared network for support and information. The group’s goal was to form a community where they were not alone, living with a disease that was largely invisible to the world. Today, ACHA offers its growing membership a wide range of resources focused on education, outreach, advocacy, and promotion of research related to CHD.

“This is a significant milestone for ACHA; thankfully, due to medical advances, more children with CHD are growing into adulthood,” said Mark Roeder, President and CEO of ACHA. “Through our advocacy and awareness campaigns and, most recently, the accreditation program we launched, we are prioritizing the need for constant support and specialized care to meet the needs of adults with CHD. We look forward to continuing to extend our impact in the years to come.”

Throughout these 20 years, ACHA boasts a number of accomplishments, most notably, serving the needs of more than one million adult patients with CHD. The organization has grown to include a Medical Advisory Board made up of top adult congenital cardiologists throughout the U.S.; the Heart to Heart Ambassador Program, which connects ACHA patient and family members with trained peers who provide support, guidance and resources; and the ACHA Actelion Fellowship Award, which provides individuals pursuing certification and a career in ACHD care with multidisciplinary clinical and research training.

Advocacy and public policy are key functions of the organization. In 2010, ACHA helped draft the Congenital Heart Futures Act, which provides government funding for public health research and surveillance on the issues that children and adults with CHD face. The effort continues today as ACHA actively advocates for the Congenital Heart Futures Reauthorization Act. 

Throughout 2018, the organization plans to engage the broader community by co-hosting 18,000 participants in Congenital Heart Walks in 25 U.S. cities to benefit both ACHA and The Children's Heart Foundation. ACHA is also planning regional conferences in Northern California, Hollywood, FL, and Spokane, WA, along with inaugural gala celebrations in Los Angeles, Denver, Houston, and Boston.

Earlier this year, ACHA launched the ACHA Adult Congenital Heart Disease (ACHD) Accreditation Program, a targeted initiative to build a community of support and network of experts with knowledge of the disease. ACHA worked with doctors, physician assistants, nurse practitioners, nurses, and ACHD patients to define and vet the accreditation criteria and process. To date, there are 17 accredited centers in cities throughout the United States: Los Angeles, CA; Palo Alto, CA; Aurora, CO; Hollywood, FL; Boston, MA; Ann Arbor, MI; St. Louis, MO; Omaha, NE; New York, NY; Cincinnati, OH; Columbus, OH; Charleston, SC; Dallas, TX; Houston, TX; Seattle, WA; Spokane, WA; and Milwaukee, WI.

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About the Adult Congenital Heart Association 

The Adult Congenital Heart Association (ACHA) is a national not-for-profit organization dedicated to improving the quality of life and extending the lives of adults with congenital heart disease (CHD). ACHA serves and supports the more than one million adults with CHD, their families and the medical community—working with them to address the unmet needs of the long-term survivors of congenital heart defects through education, outreach, advocacy, and promotion of ACHD research. For more information about ACHA, contact (888) 921-ACHA or visit www.achaheart.org. 

Attachments:

A photo accompanying this announcement is available at http://www.globenewswire.com/NewsRoom/AttachmentNg/7a7ff0bb-286e-47a1-acd7-5b87cba836b4

Morgan Appleyard
Adult Congenital Heart Association
610-254-7418
[email protected]