Programs

  • Program 1 [2020]

    LEARNING YOUR CHILD HAS CONGENITAL HEART DISEASE CAN BE OVERWHELMING. MANY CHILDREN WITH CONGENITAL HEART DISEASE NEED LIFE-SAVING SURGERY OR INTERVENTION IN THE FIRST FEW WEEKS OR MONTHS OF THEIR LIFE. THIS LEADS TO IMPORTANT MEDICAL DECISIONS ABOUT THE CARE OF YOUR CHILD, OFTEN IN A SHORT AMOUNT OF TIME AND UNDER STRESS. HOWEVER, THE ABILITY TO GET IMPORTANT INFORMATION ABOUT WHERE YOUR CHILD WILL GET THEIR TREATMENT IS LIMITED. THE ORGANIZATION IS WORKING TO ADDRESS THIS ISSUE ON MANY LEVELS.WE EMPOWER PATIENTS AND FAMILIES DIRECTLY THROUGH THE USE OF THE GUIDED QUESTIONS TOOL. GIVEN TO FAMILIES AT THE TIME OF DIAGNOSIS, THIS LIST OF QUESTIONS OFFERS SUPPORT AND CONFIDENCE WHEN TALKING TO DOCTORS, SURGEONS AND THE CARE TEAM ABOUT QUALITY, WHAT TO EXPECT WHEN IN THE HOSPITAL, AND BEYOND. ALTHOUGH WIDELY DISTRIBUTED THROUGH OUR CARE PACKAGES, OUR WEBSITE AND SOCIAL MEDIA, WE ARE COMPLETING A MULTI-CENTER QUALITY IMPROVEMENT PROJECT WITH THE COUNTRY'S TOP HEART HOSPITALS, TO DOCUMENT THAT WE ARE ACHIEVING OUR DESIRED GOALS WITH THIS TOOL. MORE BROADLY, WE ARE INFLUENCING NATIONAL POLICY AND CULTURE SURROUNDING PUBLIC REPORTING OF PEDIATRIC AND CONGENITAL HEART DISEASE OUTCOMES. WE ARE ACHIEVING THIS THROUGH A SERIES OF STAKEHOLDER SUMMITS, FACULTY PRESENTATIONS AT NATIONAL CONFERENCES, AND BUILDING RELATIONSHIPS WITH PARTNER ORGANIZATIONS. RESULTS INCLUDE MODIFICATIONS TO NATIONAL RANKING SYSTEMS (U.S. NEWS AND WORLD REPORT) AND THE INCREASE IN RESPECT FOR AND UTILIZATION OF THE PARENT VOICE WITH-IN THE MEDICAL COMMUNITY. WE ARE PRESENTLY WORKING WITH AN EXTENSIVE LIST OF STAKEHOLDERS TOWARD THE DEVELOPMENT OF THE ORGANIZATION WEBSITE TO INCLUDE CENTRALIZED CONGENITAL HEART OUTCOME DATA REPORTING AND INFORMATION TO SUPPORT INTERPRETATION FOR PATIENTS, FAMILIES AND THE PROVIDERS WHO CARE FOR THEM.
    Geographies
    Not indicated
    Dates
    Jan 1, 2020 – Dec 31, 2020
    Source
    990
    No causes provided
    No populations provided
    –
    $379K

  • Program 2 [2020]

    IN EFFORT TO GIVE KNOWLEDGE, GIVE A VOICE AND GIVE HOPE, THE ORGANIZATION CO-HOSTS A NATIONAL CONFERENCE IN WASHINGTON D.C., ANNUALLY. MORE THAN 150 ATTENDEES LEARN FROM LEADING EXPERTS, FEDERAL AGENCY REPRESENTATIVES AND POLICY MAKERS ABOUT CURRENT CONGENITAL HEART DISEASE POLICY AND RESEARCH ACTIVITIES AND THE IMPORTANCE OF SHARING THEIR STORIES TO INFORM THESE ACTIVITIES. TRAINING ON EFFECTIVE COMMUNICATION STRATEGIES AND RELATIONSHIP BUILDING IS ALSO OFFERED DURING THIS TWO-DAY EVENT. FOLLOWING THIS TRAINING, ADVOCATES ATTEND PRE-SCHEDULED VISITS TO THEIR LAWMAKERS TO SHARE THEIR CONGENITAL HEART DISEASE STORY AND EDUCATE THEIR LAWMAKERS ON KEY PRIORITIES, INCLUDING SUPPORT FOR MEDICAL RESEARCH AND DATA COLLECTION.
    Geographies
    Not indicated
    Dates
    Jan 1, 2020 – Dec 31, 2020
    Source
    990
    No causes provided
    No populations provided
    –
    $114.2K

  • Program 3 [2020]

    THE ORGANIZATION CONTINUES TO GROW OUR DIRECT IMPACT THROUGH THE IMPLEMENTATION OF A STATE CHAPTER INFRASTRUCTURE. WHILE INDEPENDENT ENTITIES, OUR STATE CHAPTERS ARE PROVIDED WITH ADMINISTRATIVE AND LEADERSHIP SUPPORT, BRANDED RESOURCES, CORE CARE PACKAGE MATERIALS AND GROUP EXEMPTION THROUGH THE NATIONAL ORGANIZATION.
    Geographies
    Not indicated
    Dates
    Jan 1, 2020 – Dec 31, 2020
    Source
    990
    No causes provided
    No populations provided
    –
    $73K