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Letter from our Executive Director
In August of 2018, the Pediatric Congenital Heart Association celebrated our 5th Anniversary. I can’t believe it’s only been 5 years since we realized there was a gap in advocacy for pediatric congenital heart disease and decided to take action. This action has helped many in the congenital heart community nd a place they previously did not have to share their voice and passion for those living with the most common birth defect. My daily interaction with families, patients and providers continues to fuel my desire to make an impact in the world of our children and friends living with congenital heart disease. Even though we started in the advocacy space and continue to lead that area, we have since developed into other programs such as education, supporting research and peer to peer support. Here are some highlights from 2018:
• Translated our most popular resource into Spanish, making our Guided Questions Tool available to even more families
• Doubling the number of hospitals committed to our multi-centered quality improvement project, evaluating how patients and families interact with their care team
• Led national eorts in improving quality and patient access of outcome information including PCHA’s 5th Summit on Transparency and Public Reporting
• Developing groundbreaking patient navigation tool for providing patient directed access to hospital outcome data
• Committed to reaching a more diverse community in each program area
• Added to the number and depth of the resources for adolescents and adults with CHD while encouraging patients of all ages to stay in care
• Led the effort to the passage of the Congenital Heart Futures Reauthorization Act which allocated $50 million to the Center of Disease Control over 5 years for Congenital Heart Disease research
• Collaborating with more than 50% of pediatric cardiology programs across the country
Peer to Peer Support:
• Educating and empowering more than 6000 patients and families through our local programs
• Distribution of essential resources and care packages, leveraging 9000+ volunteer hours through our 14 state chapters
• Building a knowledgeable and compassionate community through social media, reaching 250,000 people a week
We pride ourselves in recognizing gaps in the Congenital Heart Disease space and seeing if we can help solve those issues. Even though we are a small team, we accomplish a lot throughout the year, and we could not accomplish any of this on our own, which is why we rely on the growing grassroot base of volunteers and donors who tirelessly support our mission and programs. At PCHA we always emphasize – this is not about our individual child or friend, it’s about ALL of us that are banding together to Conquer Congenital Heart Disease.
We will continue to give first in all that we do because that’s who we are and what we believe. 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
What We’re Up To
Leading the Conversation
110 of the brightest minds in congenital heart disease including surgeons, cardiologists, nurses, administrators and major media outlets, gathered in one room in September of 2018. Led by patients and parents, together, we furthered the discussion of how hospitals can share information in a way that is most meaningful to patients and families. This was PCHA’s 4th Summit on Transparency and Public Reporting. This is the power of PCHA’s transparency programs.
Uniting the Voices
175 patients, parents, siblings, friends and physicians told their story on Capitol Hill as part of the 2018 Congenital Heart Legislative Conference. Voices united in February to bring about powerful change in December. We are thrilled that as 2018 drew to a close, the President signed into law the Congenital Heart Futures Reauthorization Act. Our advocates worked tirelessly to see the federal commitment to CHD public health research and surveillance more than doubled, as this law authorized $10 million annually for CHD related activities at the Centers for Disease Control and Prevention. That is $50 million over 5 years! This is the power of PCHA’s advocacy programs.
49,000 families educated through essential resources distributed in care packages and accessed through our website. These nationally developed and expert vetted tools, tips, and strategies empower families with information ranging from the heart structure and function to living a long life with congenital heart disease. This is the power of PCHA’s educational programs.
Making a Difference
PCHA maximizes our resources as we execute programs that both change the national landscape and help the individual patient and family across the lifespan. We are unique in our ability to develop and execute dynamic activities that strategically respond to the changing needs of the community.
PCHA celebrated our second year with our state chapter program. We ended the year with 14 states involved who are giving knowledge, a voice, and hope by directly meeting the comprehensive lifelong needs of patients with congenital heart disease. Our state chapters are comprised of dedicated volunteers that collaborate with local hospitals and organizations to provide families with critical information and a personal connection. We pride ourselves on the fact that our state chapters are more than just care bags.
State chapters provide educational and social events from support groups to arts & crafts projects and sporting events. They also reach the community through inspiring social media campaigns that reach thousands of people every day. Our chapters educate and engage their local hospital staff through Lunch & Learn meetings. Fundraising is an essential piece where every chapter has the opportunity to get creative and host unique events like Conquering the Runway events where the patients strut their stu as well as Conquering CHD Walks where hundreds of families unite to raise awareness and funds to support programming for the CHD community in their state. Our volunteers dedicate a great deal of time delivering the Conquering CHD Care packages that offer valuable resources and comfort items to inpatient families and connect them with others who share similar experiences. They pride themselves on providing one-on-one support that offers encouragement and insight throughout all stages of their journey with congenital heart disease.
What’s Next For PCHA
Looking into 2019 we are continuing to work towards improving quality and outcomes for families impacted by Congenital Heart Disease. Through further development of our patient portal we’ll be giving patients and family access to important hospital outcome data. With the development of 4 to 5 new state chapters, we will continue to increase the number of families who have access to our support and resource programs. In addition, we are redeveloping our website to increase access to essential and unique online resources. All this, with a renewed commitment to diversity and ensuring we reaching the people who need our help the most.
Your support matters as we work to achieve our mission.
Together, we are Conquering CHD!