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Letter from our Executive Director
2017 was a year of tremendous growth for the Pediatric Congenital Heart Association. We launched our state chapter program which had an immediate impact across the country by meeting patients and families where they are. Through the work of two Transparency summits and our GuidedQuestions Tool Pilot Project, we advanced our initiative to bring essential information to patients and families, empowering them to make important decisions about their health care, and have changed the way that doctors interact with their patients. Through our advocacy efforts including a National Legislative Conference in Washington D.C., multiple meetings with our legislators, grassroots advocacy recruitment, and supporting the re-introduction of the Congenital Heart Futures Reauthorization Act, we have seen an increase in awareness of congenital heart disease in Congress which strengthens our relationships with legislative champions and federal partners. In an effort to increase awareness of the most common birth defect, we launched our #CHDWise program which introduced Echo the Owl, Echo’srole of putting a face to the task of educating the public about CHD, has reached well over 100,000 people.
Speaking of outreach, we were featured in several articles with U.S. News and World Report. In the wake of Jimmy Kimmel’s revelation about his child with CHD, we were featured in an article produced by social media giant Mashable! Their piece “What to do if Jimmy Kimmel’s baby has made you cry,” highlights our work with education, support, and advocacy. We were also invited to share our expertise in patient and family engagement, speaking at several national medical conferences and serving in leadership roles on multiple national clinical, research, and public health committees.
As we strive to Conquer Congenital Heart Disease, accomplishing this through collaboration to provide education, support, knowledge, and awareness, we are successful because of the people that make PCHA what it is. In 2017 we recruited 2 new staff members supporting our State Chapter Program and our Education programming. We have increased the number of volunteers exponentially who serve at the national level, as well as on the ground with our state chapters. We have also diversified our donor base to capitalize on the generosity of individuals by adding a second Congenital Heart Gala, growing our peer-to-peer online fundraising, and developing existing donors. Whether it is through the gift of money or the gift of time – the generosity of others directly translates to our ability to Give Knowledge, Give a Voice, and Give Hope.
Together, we are conquering CHD,
Knowledge is power. PCHA seeks to empower patients and families by providing them with the educational resources they need to achieve the highest quality care available to them. Our programs are designed to reach the families themselves, while at the same time address necessary changes to patient care systems to promote a culture of engaged patient care.
Give a Voice.
Knowledge is power. PCHA seeks to empower patients and families by providing them with the educational resources PCHA seeks to amplify the voice of the CHD community to inform policymakers of the significant public health burden related to CHD. By creating a solid grass-roots foundation, we leverage this voice to successfully inform legislators, administrators, government agencies, and other key stakeholders to move forward key policy changes that impact the congenital heart disease community as a whole.
Knowledge is power. PCHA seeks to empower patients and families by providing them with the educational resources tPCHA understands the desperate need for research to improve outcomes for patients with CHD. We work with federal agencies, medical professionals and investigators to promote patient-focused research. PCHA promotes patient engagement in research from protocol development and implementation through information dissemination. We also advocate for robust funding mechanisms that address critical gaps in understanding of CHD.
Grow. Connect. Conquer.
At the onset of 2017 saw a new and exciting program for PCHA – the launch of the Congenital Heart Network. Executed through our new state chapter infrastructure, the network is aimed at improving the lives of those with CHD and their families through direct support and education, meeting families where they are. Through local activities like peer-to-peer support, care package distribution and education materials; we are working directly with patients, families and medical professionals, impacting one life at a time.
More and more people are now living with congenital heart disease or CHD. Estimates suggest the CHD population is greater than 3 million, growing at 5% each year. The age of our population is growing, too. Our kids are growing up! In fact more than half of the CHD population are adults!
The Pediatric Congenital Heart Association is growing, too. We have more volunteers, more people reached, more activities completed, and most importantly, we have grown our impact. In doing this, we are better able to meet the needs of the congenital heart community across the lifespan.
“We can do more, together.” Whether you are in need of support or you find you are ready to give back, PCHA has a place for you.
Learn. Knowledge is a powerful tool. Visit our website and explore our resources.
Share. Become a social media champion and help us educate others about congenital heart disease.
Do. Volunteer either locally or nationally. Support the work of our State Chapters as they plan programs, distribute care packages and help families.
Give. We offer many opportunities for you to donate directly here
“During our last hospital stay we received a PCHA bag. It was actually in Brooklyn’s room when we first walked in. Seeing that bag is a sign of support to me. Support is important in our journey. This a great way to introduce them to PCHA and provide them with some essentials needed during their stay. I appreciate PCHA supporting us and being there for us.”
Maggi Curry, Brooklyn’s Mom