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Letter from our Executive Director
2019 was a groundbreaking year for the Pediatric Congenital Heart Association (PCHA) in many ways.
We accomplished all our strategic programmatic and financial goals, yet, more important was our inner growth. At the March 2019 Legislative Conference in Washington, D.C., while talking to the attendees about our organization, I unexpectedly shared the passion to be more diverse and impact the entire CHD community across the lifespan. After this conversation, we immediately reexamined our organization and began evaluating how we were best serving patients and families.
Our main question: ensuring ALL patients and families are represented. We decided to start by developing a robust set of resources that addressed the needs of the teen and adult population in a way that has not existed. We are committed to further developing new materials and modifying existing ones for the entire CHD population, including those underserved patients and families who might not be receiving education or support because of socio-economic reasons.
This commitment to engage the entire community led us to the second major decision in 2019—changing our name. Since being founded, we have focused on the pediatric population, but as we have grown, our name needed to reflect who we represent. We spent over 18 months of research, debates, strategic planning sessions and ultimately, we decided on Conquering CHD. It’s not traditional, but neither are we. It is what we are doing every day, Conquering CHD.
Finally, we are building upon our existing work advocating for federally funded research and partnering with other researchers. We have begun to build the infrastructure of patient-driven research. With the Covid-19 pandemic happening as we speak, it reinforced the importance of research for our patients and families who are in the high-risk category.
Our staff, board and volunteers are 100% CHD patients and families and we are serving the lifespan, regardless of their defect. We will not stop fighting the most common birth defect. We will continue to give first in all that we do because that is 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,
“The work this organization is doing matters more than most people realize. I’ve experienced the life-changing hope and power that their education and support brings to my family, but also to people with CHD across the country.“
– Amit Shah, Heart Dad
Advocacy & Transparency
The February 2019 Congenital Heart Legislative Conference in Washington D.C. was a resounding success with 185 attendees comprised of children and families, bereaved families and adults living with congenital heart disease, as well as medical providers. Participants learned about current CHD policy, health disparities, and the importance of life-long care messaging.
Patients of every age, families, medical providers, and legislators participated in dynamic conversations about transparency and public reporting at the 6th Transparency Summit at Nationwide Children’s Hospital in Columbus, OH in October. The Summit also focused our 2019-2020 national policy agenda on the increasing need for accountability and standards of care while providing guidance for existing projects including health literacy, the Guided Questions Tool, and the Hospital Navigator.
Empowering Through Education
- More than 52,400 individuals accessed educational resources either by receiving care kits through hospital visits or clinician visits, or by referencing materials through our website.
- Updated language to enhance accessibility by reducing the health literacy level of The Guided Questions Tool (GQT), used to assist patients and families navigate complex conversations with their medical providers.
- Developing the Hospital Navigator, a tool for understanding surgical data and outcomes designed by patients and families for patients and families to answer the persistent need for accessibility and transparency. The Navigator, launching in 2020, will better equip patients and families to make informed medical decisions. All congenital heart centers in the United States are invited to participate in the database.
Across the Lifespan
With more than 3 million patients living with congenital heart disease in the United States, it is imperative that each voice is heard. With the addition of a new staff member solely dedicated to adult CHD, Conquering CHD continues our commitment across the lifespan with the expansion of our adult programs and resources. Teen educational resources better meet the needs of those undergoing a transition of care. Adult specific educational tools help adults navigate their daily lives.
“As a CHD patient, I really hope for the future that those affected by CHD, no matter where they live or how much money they make can have the same access to quality health care, education, or support.”
– Trinity, Adult Living with CHD
Peer to Peer Support
State chapters made up of volunteers, the vast majority who are patients and families themselves, develop relationships with their local hospitals, local foundations and other organizations to provide patients and families with educational resources and programming.
- 14 state chapters with more than 11,400 volunteer hours.
- More than 3,800 Conquering CHD care packages were delivered to inpatient families containing educational resources and age-appropriate comfort items.
- Live-streamed educational events and virtual support groups to increase accessibility.
Chapters sponsor numerous family-friendly events throughout the year to raise CHD awareness, provide fun and relaxation for families and to raise funds. Events such as 5ks, walks and Conquering the Runway are triumphant events celebrating all lives, the young and young at heart, as well as recognizing the ones we’ve lost to CHD. The majority of funds raised are invested back into the local communities.
Our strong online presence increases accessibility to educational resources improves dialogue among patients and families and expands advocacy efforts.
The generosity of the CHD community is inspiring. Through bake sales, T-shirt sales, workplace fundraisers, a walk/run, and donations in honor or in memory of loved ones, dedicated individuals are leading their own fundraising activities. In addition, hundreds of others joined forces with our corporate partners to support Conquering CHD through galas and cocktail events in Orlando, Milwaukee, Denver, New York City, and San Francisco. Honest and emotional stories of CHD patients were shared, including the story of Theo (top), who lost his battle with CHD as an infant. Their stories reinforced the need to continue to fight for all those affected by CHD.
Conquering CHD recognizes the powerful impact of collaboration among patients, families, medical providers, and legislators. Our volunteer team consists of more than a dozen steering committee members comprised of both patients and family members who share real-world experiences to influence program development and help identify CHD community needs. The 23 members of our Medical Advisory Board are pediatric cardiologists, pediatric cardiothoracic surgeons, and other medical professionals who practice medicine throughout the United States. The MAB serves as our reliable sounding board, providing us guidance as we develop responsible programs that meet the needs of patients and families while meeting medical standards.
Board & Staff
Director of Programs
State Chapter Coordinator
State Chapter Coordinator
Attorney, NeJame Law
Clinical Assistant Professor, D.N.P., Marquette University
Executive Director, Conquering CHD
Senior Director of Clinical Operations, Cohort Intelligence
Operations, Slalom Consulting
Senior Workflow Advisor, XSOLIS
Learn more about our leadership at: https://www.conqueringchd.org/about/staff/