The Courageous Parents Network Inc

THE MISSION OF COURAGEOUS PARENTS NETWORK IS TO SUPPORT PARENTS AND FAMILIES OF CHILDREN LIVING WITH LIFELIMITING ILLNESS WITH THE TOOLS THEY NEED AS THEY ADJUST TO THE PROGNOSIS AND THEN WHEN THEY CONTEMPLATE THEIR CHILDS TRANSITION TO ENDOFLIFE.

ACTIVITIES AND ACCOMPLISHMENTS DURING THIS TIME (1)PROVIDER OUTREACH ACTIVITIES "DIRECT OUTREACH TO ALL PEDIATRIC PALLIATIVE CARE PROGRAMS IN THE COUNTRY - BOTH COMMUNITY AND HOSPITAL BASED. "COLLABORATIONS WITH PROFESSIONAL ORGANIZATIONS - SUCH AS STATE-BASED COALITIONS - TO INCREASE AWARENESS OF THE NEEDS OF FAMILIES AND THE VALUE OF PALLIATIVE CARE. "DELIVERY OF COLLATERAL AND MESSAGING, VIA EMAIL, DIRECT MAIL AND IN-PERSON CONVERSATION THAT BUILD ON THE LEARNINGS OF THE PAST FIVE YEARS. LIVE EVENTS & PROFESSIONAL PRESENTATIONS/WEBINARS - ALL VIRTUAL - TO INDUSTRY, RARE DISEASE COMMUNITY, AND PEDIATRIC PROVIDERS. SOME EVENTS ALSO INCLUDED PARENTS. 16 PRESENTATIONS TO PROVIDER AUDIENCES; 566 PROVIDERS/CLINICIANS REACHED 8 PRESENTATIONS TO INDUSTRY/PDGS - 255 INDUSTRY/PATIENT DISEASE GROUPS 2021 12/07/21 BCBS ASSOCIATION OF AMERICA LEADERSHIP (ALL THE BLUES 12/02/21 BC SCHOOL OF SOCIAL WORK 12/01/21 NYU LANGONE, BIOETHICS & GENETICS 11/19/21 CRESCENT COVE PPC SYMPOSIUM: F/U LIVE 11/18/21 QED THERAPEUTICS TOWN MEETING 11/17/21 ZOOM: HERE COME THE HOLIDAYS 11/02/21 PEDIATRIC RESIDENTS AT MED UNIVERSITY OF SOUTH CAROLINA 10/18/21 COMPLEX CARE AND PED PALLIATIVE CARE NEW SPECIAL INTEREST GROUP 10/10/21 AAP SOHPM: CLINICAL TRIAL UNIT 9/24/21 IN THE ROOM: PUTTING THE SELF BACK IN SELF CARE 9/17/21 BIOMARIN NORTH AMERICAN SUMMIT 9/10/21 TREASURE HEALTH 8/24/2021 ZOOM: DISPELLING THE MYTHS: PC, HC, AND CONCURRENT CARE 7/29/2021 ZOOM: BEING THE DAD 7/27/2021 NORD: LIVING RARE, LIVING STRONGER 7/26/2021 ULF CONFERENCE (UNITED LEUKODYSTROPHY) KRABBECONNECT 7/25/2021 ULF ANNUAL CONFERENCE 7/16/21 WORKING GROUP, PEDIATRIC GENE THERAPY AND MEDICAL ETHICS, NYU LANGONE (PROVIDERS) 06/29/2021 ZOOM: BEING THE DAD (PARENTS AND PROVIDERS) 6/27/2021 NORD: LIVING RARE, LIVING STRONGER (PARENTS AND PROVIDERS) 6/26/2021 ULF CONFERENCE (UNITED LEUKODYSTROPHY) KRABBECONNECT (PARENTS AND INDUSTRY) 6/25/2021 ULF ANNUAL CONFERENCE (PARENTS AND INDUSTRY) 6/11/2021 GLOBAL GENES RARE DRUG DEVELOPMENT SYMPOSIUM (INDUSTRY) 6/08/2021 FAMILY VOICES LEADERSHIP CONFERENCE: PARENTS AND PROVIDERS 5/25/2021 PEDIATRIC ACADEMIC SOCIETIES (PROVIDERS) 5/24/2021 ZOOM: PROCESSING AG AND REFRAMING HOPES AND EXPECTATIONS (PARENTS AND PROVIDERS) 5/20/2021 TRANSITION PLANNING FOR THE FULLY DEPENDENT CHILD (PROVIDERS) 5/14/2021 ADVANCED CARE PLANNING TO PPCN MASSACHUSETTS (PROVIDERS) 5/04/2021 BIOMARIN ADVOCATE CONNECTIONS (INDUSTRY) 4/28/2021 PREGNANCY AFTER LOSS (PARENT AND PROVIDERS) 4/1/2021 BCBS PEDIATRIC NURSE CASE MANAGERS (PROVIDERS) 3/31/2021 ZOOM: TRANSITIONING TO ADULTHOOD (PARENTS AND PROVIDERS COLLABORATIONS AND CO-AUTHORSHIP IN RESEARCH (WITH PUBLICATIONS) 4 PUBLISHED ARTICLES INCLUDING 2 IN PEDIATRICS STATE OF THE SCIENCE AND FUTURE RESEARCH DIRECTIONS IN PALLIATIVE AND END-OF-LIFE CARE IN PAEDIATRIC CARDIOLOGY: A REPORT FROM THE HARVARD RADCLIFFE ACCELERATOR WORKSHOP. CARDIOLOGY IN THE YOUNG, JUNE 2021 MELISSA COUSINO, PHD, BLYTH LORD, ELIZABETH BLUME MD . COUSINO ET AL 2021 RADCLIFFE STATE OF THE SCIENCE SUPPORTING FAMILIES CONSIDERING PARTICIPATION IN A CLINICAL TRIAL: PARENT-PROVIDER PERSPECTIVES. PEDIATRICS. MAY 2021 TERENCE R. FLOTTE, BLYTH TAYLOR LORD AND JENNIFER SIEDMAN DOI: DOI.ORG/10.1542/PEDS.2020-042044 ASSOCIATION BETWEEN CHILDREN WITH LIFE-THREATENING CONDITIONS AND THEIR PARENTS- AND SIBLINGS' MENTAL AND PHYSICAL HEALTH JAMA OPEN NETWORK, DECEMBER 2021 CHRIS FEUDTNER, MD, PHD, MPH; RUSSELL NYE, PHD, JACKELYN Y BOYDEN, PHD, MPH, RN; KATHERINE E SHWARTZ, MD; EMILIE R. KORN, MD; AARON G. DEWITT, MD; AMY T. WALDMAN, MD, MSCE; LISA A. SCHWARTZ, PHD; YUMING A. SHEN, PHD; MICHAEL MANOCCHIA, PHD; RUI XIAO, PHD; BLYTH T. LORD, EDM; DOUGLAS HILL, PHD. PARENTS AS ADVOCATES FOR PEDIATRIC PALLIATIVE CARE. PEDIATRICS. OCTOBER 2021 BLYTH TAYLOR LORD, WYNNE MORRISON, RICHARD D. GOLDSTEIN AND CHRIS FEUDTNER DEVELOPMENT, PRODUCTION AND RELEASE OF NEW CONTENT WITH PEDIATRIC PROVIDERS 3 NEW CONTENT AREAS TRANSITIONING TO ADULTHOOD FOR THE FULLY DEPENDENT CHILD THE POWER OF RITUAL PREGNANCY AFTER CHILD LOSS 4 NEW GUIDES QUALITATIVE RESEARCH CPN ENGAGED AN INDEPENDENT MARKET RESEARCH CONSULTING COMPANY TO INTERVIEW 12 PROVIDERS (AS WELL AS 12 PARENTS) ABOUT THEIR NEED STATES AND USAGE PATTERNS OF COURAGEOUS PARENTS NETWORK. EIGHT OF THE PROVIDERS WERE ALREADY USERS OF CPN; FOUR WERE NEW USERS WHO DID A FOLLOW-UP INTERVIEW A MONTH LATER. THE FINDINGS INFORMED MARKETING AND OUTREACH ACTIVITIES WITH THE PROVIDER AUDIENCE, AS WELL AS CPN'S BOARD-DRIVEN STRATEGIC PLANNING PROCESS WHICH BEGAN IN NOVEMBER 2021. DEVELOPMENT, BETA-TESTING AND LAUNCH OF THE CPN MOBILE APP CPN CONDUCTED 8 QUALITATIVE INTERVIEWS WITH PROVIDERS FOR FEEDBACK ON ITS NEW MOBILE APP. FEATURES TO SUPPORT BUNDLING OF ASSETS FOR PROVIDERS TO SHARE WITH/REFER TO FAMILIES WAS DEVELOPED. THE APP LAUNCHED IN OCTOBER 2021. MONTHLY ENEWSLETTER TO PEDIATRIC PROVIDERS PRODUCTION AND DELIVERY OF CONTENT IN SPANISH ADDITION OF ITS FIRST VIDEOS WITH A SPANISH-SPEAKING MOTHER (AND CHAPLAIN/TRANSLATOR). 10 VIDEOS IN TOTAL ON THE SUBJECT OF CARING FOR A CHILD WITH TRACHEOSTOMY, LIVING IN THE HOSPITAL, AND HOLDING ON TO HOPE. INTERVIEW WITH A BEREAVED SPANISH-SPEAKING MOTHER WHO IS ALSO A PEDIATRIC NURSE ON HER EXPERIENCE WITH HER SON AND HER TRANSITION TO BECOMING AN ADVOCATE FOR PALLIATIVE CARE EDUCATION FOR NURSES. TRANSLATION OF 8 GUIDES INTO SPANISH. IMPACT THESE ACTIVITIES HAVE RESULTED IN GROWTH OF BOTH PARENT AND PROVIDER MEMBERSHIP IN CPN (MEMBERSHIP IS OPTIONAL, BUT PROVIDERS MUST 'JOIN' CPN TO ACCESS THE PROVIDER PORTAL) AS WELL AS AUDIENCE ON FACEBOOK. TOTAL AND UNIQUE MONTHLY VISITORS TO THE CPN SITE HAS INCREASED FROM AN AVERAGE OF 4500 MONTHLY USERS IN 2020 TO AN AVERAGE OF 8400 MONTHLY USERS A MONTH. IN THE PAST 12 MONTHS: FEBRUARY 2021 FEBRUARY 2022 PROVIDER MEMBERSHIP: 1464 TOTAL 1793 TOTAL PARENT MEMBERSHIP: 1227 TOTAL 1664 TOTAL USERS: 5519 (IN 28 DAYS) 8418 (IN 28 DAYS) YOUTUBE VIEWS: 21,119 (IN 28 DAYS) 25,338 (IN 28 DAYS)