ACHA is pleased to be working with key members at the government relations firm Cavarocchi Ruscio Dennis (CRD) Associates to develop and implement a new comprehensive advocacy strategy. Our team has been busy meeting with key stakeholders, including members of the Board, Medical Advisory Board, patients and family members to develop an advocacy plan that raises awareness of adult congenital heart disease and ACHA’s profile in Washington, D.C.
ACHA is happy to announce a new leadership role, Senior Ambassador, within the Heart to Heart program. A Heart to Heart Senior Ambassador is an Ambassador who has successfully served in their current role for at least two years. Senior Ambassadors are interested in providing support, guidance, education and resources to other ambassadors and local CHD programs.
Please join me in welcoming the newest member of the ACHA team, National Director of Development Georgia Krehbiel. Some of you may have met Georgia in April at our Los Angeles Regional Event, where she hit the ground running before her official start date later in the month.
It is our honor and pleasure to personally express our appreciation and to give special recognition to our ACHA volunteers—the Board of Directors and Medical Advisory Board, Heart to Heart Ambassadors, Congenital Heart Walk chairs and committee members, volunteer fundraisers, Young Professionals Committee, ACHA bloggers, and so many more. You motivate us and keep us fully engaged in creating a brighter tomorrow for those born today—those living with, those surviving and those flourishing with CHD.
What an exciting Congenital Heart Legislative Conference in Washington, D.C., February 25-26! Teaming up together, the Adult Congenital Heart Association, Children’s Heart Foundation and the Pediatric Congenital Heart Association brought together 116 advocates from 29 states who attended more than 130 meetings with Senators, Representatives and their staffs to spread the word about congenital heart disease.
On February 26, 2015, more than 130 congenital heart disease (CHD) advocates will be reaching out to their lawmakers in Washington, D.C., to ask for three simple things. We hope you will join from home, too!
Patient Outcomes Research to Advance Learning (PORTAL) is a new collaboration of four healthcare delivery systems—Kaiser Permanente, Group Health Cooperative, HealthPartners, and Denver Health—and their 11 research centers. These partners are conducting research comparing the effectiveness and safety of preventive, diagnostic, and treatment options for congenital heart disease (CHD). During 2014 and 2015, PORTAL will identify high-priority research questions for CHD.
This February during Heart Month, and especially during Congenital Heart Disease Awareness Week (February 7-14), the Adult Congenital Heart Association wants to educate the public about CHD—specifically that congenital heart defects are the number one birth defect and that they require lifelong care.
Whether you have CHD or a loved one in your life with CHD, there are many things you can do to help us spread the word.
We are excited to announce our strategic plan for 2015-2017, consisting of five main strategic objectives. As our vision states, ACHA will be the leading voice in congenital heart disease education and advocacy, and raise the public awareness of congenital heart disease as a lifelong disease; improve the standards for access to and delivery of quality care for adults with congenital heart disease; and, in collaboration with our partners, will drive the public policy agenda affecting adults with congenital heart disease.