COURAGEOUS PARENTS NETWORKINC

COURAGEOUS PARENTS NETWORK IS RECOGNIZED BY CLINICIANS, PATIENT GROUPS AND INDUSTRY AS A TRUSTED AUTHORITY AND THOUGHT LEADER-PARTNER REPRESENTING THE LIVED EXPERIENCE AND NEEDS OF FAMILIES CARING FOR A CHILD WITH A SERIOUS MEDICAL CONDITION. HIGHLIGHTS FOR 2024 INCLUDE COLLABORATIONS WITH: RONALD MCDONALD HOUSE CHARITIES 2024 BROUGHT NEW OPPORTUNITIES FOR PARTNERING WITH RONALD MCDONALD HOUSE CHARITIES (RMHC). IN JANUARY, CPN DIRECTOR OF CLINICIAN ENGAGEMENT AND OUTREACHDR. CHRISSY SALLEY AND PARENT CHAMPIONS EMILY CALLAWAY AND PARVATHY RAMAN PRESENTED A WEBINAR ON PEDIATRIC PALLIATIVE CARE TO RMHC STAFF AND VOLUNTEERS. CHRISSY AND PARENT CHAMPION ASHLEY WADDELL TINGSTAD ALSO PRESENTED AT THE RMHC INTERNATIONAL CONFERENCE IN JULY, 2024, WHERE THEY DISCUSSED HOW RONALD MCDONALD HOUSE STAFF AND VOLUNTEERS, IN THEIR VITAL ROLE AS SUPPORT TO FAMILIES, CAN EMPOWER THE CAREGIVERS WHO STAY WITH THEM DURING THEIR CHILD'S ILLNESS. THEN, IN DECEMBER, CHRISSY WAS JOINED BY PARENTS LINDSEY TOPPING, NAOMI WILLIAMS, CAROLINE MENZIA AND AMY GRAVER TO PRESENT A WEBINAR ON COMMUNICATING WITH PARENTS OF CHILDREN WITH MEDICAL COMPLEXITY. STANFORD MEDICINE CPN WORKS WITH THE QUALITY OF LIFE AND PEDIATRIC PALLIATIVE CARE TEAM (QOLA PROGRAM) AT STANFORD MEDICINE UNDER THE LEADERSHIP OF DR. CLAIRE WAKEFIELD TO EXPLORE CLINICIAN AND PARENT PERSPECTIVES ON NEUROJOURNEY. STANFORD'S FORTHCOMING QUALITATIVE RESEARCH STUDY WILL RESULT IN DATA TO HELP CPN AND CLINICIANS BETTER UNDERSTAND THE IMPACT OF NEUROJOURNEY IN CLINICAL SETTINGS, AND PROVIDE INSIGHT INTO AREAS OF STRENGTH AND OPPORTUNITIES FOR IMPROVEMENT. AMERICAN ACADEMY OF PEDIATRICS SECTION ON HOSPICE AND PALLIATIVE MEDICINE COURAGEOUS PARENTS NETWORK CONTINUED OUR FORMAL LIAISON RELATIONSHIP WITH THE AMERICAN ACADEMY OF PEDIATRICS SECTION ON HOSPICE AND PALLIATIVE MEDICINE (SOHPM). ITS REPRESENTATIVE, LIZ MORRIS, SHARED KNOWLEDGE AND PERSPECTIVES REGARDING THE PATIENT AND FAMILY EXPERIENCE AT MONTHLY EXECUTIVE COMMITTEE MEETINGS AND ANNUAL PLANNING SESSIONS. LIZ ALSO SERVED AS A CO-AUTHOR FOR SOHPM'S UPDATED PEDIATRIC PALLIATIVE CARE POLICY STATEMENT IN PROCESS. UPDATES TO THIS STATEMENT WILL PROVIDE CONCRETE GUIDANCE TO ALL PEDIATRIC PROVIDERS REGARDING EVIDENCE-BASED APPROACHES TO PROVIDING PALLIATIVE INFORMED CARE. FURTHER, LIZ HELPED IDENTIFY PARENT VOICES FROM WITHIN THE NETWORK TO OFFER FAMILY EXPERTISE TO THE GROWING FIELD OF PEDIATRIC PALLIATIVE CARE. ALSO, CPN PARENT CHAMPION ASHLEY WADDELL TINGSTAD PRESENTED AT THE 2024 AAP NATIONAL CONFERENCE & EXHIBITION ON "WHEN DECISIONS CAN'T BE SHARED: SUPPORTING BIRTHING FAMILIES THROUGH LIMITED OPTIONS." FINALLY, CPN FAMILIES HAVE BEEN FEATURED IN A STANDING PARENT COLUMN IN THE SOHPM QUARTERLY PERSPECTIVES PUBLICATION, WHICH REACHES APPROXIMATELY 1,700 INDIVIDUALS THROUGH THE SOHPM LISTSERV FOR CLINICIANS AND OTHER AFFILIATED PROVIDERS. COURAGEOUS PROVIDER AWARD THE COURAGEOUS PROVIDER AWARD ANNUALLY RECOGNIZES CLINICIANS PROVIDING EXCEPTIONAL FAMILY-CENTERED CARE IN CIRCUMSTANCES OF SERIOUS CHILDHOOD ILLNESS. NOMINEES MUST DEMONSTRATE EXCELLENCE IN ENGAGING WITH PATIENTS, PARENTS OR OTHER CAREGIVERS, AND/OR OTHER PEDIATRIC SPECIALISTS IN A HOLISTIC, MULTIDISCIPLINARY APPROACH TO CARE. THEY MUST DEMONSTRATE QUALITIES OF COMPASSION, TENACITY AND EMPATHY IN JOURNEYING WITH CHILDREN AND THEIR FAMILIES. THE 2024 COURAGEOUS PROVIDER AWARD WAS MADE POSSIBLE WITH FUNDING FROM THE ILENE BEAL CHARITABLE FOUNDATION. TWO CLINICIANS WERE RECOGNIZED: CAROL MAY, RN, MSN, MBA, CHPPN, UPMC CHILDREN'S HOSPITAL OF PITTSBURGH ZEENA AUDI-SABA, MD HASSENFELD CHILDREN'S HOSPITAL, NYU LANGONE HEALTH NEUROJOURNEY COURAGEOUS PARENTS NETWORK LAUNCHED NEUROJOURNEY IN SPANISH (TEXT AND AUDIO). THROUGH THIS AND FORTHCOMING TRANSLATIONS, WE AFFIRM OUR COMMITMENT TO INCLUSIVITY AND ACCESSIBILITY, ENSURING THAT MORE FAMILIES CAN FIND COMMUNITY AND EMPOWERMENT ALONG THEIR JOURNEY. SPANISH TRANSLATION WAS MADE POSSIBLE THANKS TO GENEROUS SUPPORT FROM SANOFI AND STANFORD MEDICINE. IN THE ROOM LIVE-STREAMED EVENTS IN 2024, CPN HOSTED ELEVEN LIVE-STREAMED IN THE ROOM EVENTS EXPLORING PRESSING ISSUES FACED BY PARENTS AND THE CLINICIANS WHO SUPPORT THEIR FAMILIES. MORE THAN 1,000 PARTICIPANTS REGISTERED FOR THESE PROGRAMS. A SPECIAL SESSION INTRODUCED THE FACES BEHIND COURAGEOUS PARENTS NETWORK TOGETHER WITH PARENTS AND PROVIDERS WHO REFLECTED ON THEIR SHARED JOURNEY IN CELEBRATION OF CPN'S 10 YEARS. OTHER METRICS IN 2024, COURAGEOUS PARENTS NETWORK HAD: 60,500 UNIQUE VISITORS TO ITS DIGITAL PLATFORM 140,132 PAGE VIEWS ON ITS DIGITAL PLATFORM 210,580 VIDEO VIEWS 4400 FAMILY MEMBERS 3876 CLINICIAN MEMBERS 37,000 CLINICIANS AND PARENTS REACHED IN LIVE PRESENTATIONS AND GRAND ROUNDS