2025-07-17T09:14:45-04:00 2024-12-31 463169148 DAVISKELLY LLP 42 MILL ROAD WILMINGTON MA 01887 990 2024-01-01 462614138 COURAGEOUS PARENTS NETWORKINC COUR 6175711779 21 ROCHESTER ROAD NEWTON MA 02458 BLYTH TAYLOR LORD EXECUTIVE DIRECTOR 6175711779 2025-07-15 true false RANDALL S DAVIS P10427372 9787648966 2025-07-17 2024 2025-03-06 01:10:19Z BLYTH TAYLOR LORD 21 ROCHESTER ROAD NEWTON MA 02458 1119525 false X WWW.COURAGEOUSPARENTSNETWORK.ORG/ X 2013 MA 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. 11 11 5 0 849639 1080382 0 75892 39143 -6114 -8397 919417 1111128 0 0 374413 457994 0 56538 533385 514016 907798 972010 11619 139118 1352065 1516380 23936 42063 1328129 1474317 X 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. false false 775148 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 775148 true true false false false false false false false false true false false false false false true false false false false false false false true false false false false false false false false false false false false false false false false false false false false false false true 25 0 5 true false false false false false false false false false false false false false false X 11 11 false false false false false false false true true false false false false false false true true false MA X BLYTH TAYLOR LORD 6175711779 21 ROCHESTER ROAD NEWTON MA 02458 BLYTH TAYLOR LORD EXECUTIVE DI 40.00 X 126918 0 0 ZACH BREWER ENGINEER 40.00 X 118919 0 0 ERIC BARTHOLOMAE TREASURER 1.00 X X 0 0 0 VINNY CHIANG DIRECTOR 1.00 X 0 0 0 TERENCE FLOTTE DIRECTOR 1.00 X 0 0 0 ROB GO DIRECTOR 1.00 X 0 0 0 JENNY TOOLIN MCAULIFFE DIRECTOR 1.00 X 0 0 0 DIANE MEIER DIRECTOR 1.00 X 0 0 0 MYRA SACK DIRECTOR 1.00 X 0 0 0 JONATHAN SANDS DIRECTOR 1.00 X 0 0 0 BOB SEARLE SECRETARY 1.00 X X 0 0 0 KATE TIGHE DIRECTOR 1.00 X 0 0 0 KENDRA WILDE DIRECTOR 1.00 X 0 0 0 245837 2 false false false 239124 841258 1080382 39143 39143 239124 8397 -8397 1111128 39143 X 126918 92650 21576 12692 293925 262602 2042 29281 37151 28587 4970 3594 29629 29629 399631 367221 29129 3281 33147 2935 26366 3846 28049 9027 15914 3108 6223 5506 636 81 7245 1351 5894 6191 5269 267 655 3901 3901 972010 775148 140324 56538 296510 583901 1021137 819409 77300 1624 427 9445 8357 778 1088 26816 34255 5200 1352065 1516380 17936 42063 6000 23936 42063 X 1289004 1389191 39125 85126 1328129 1474317 1352065 1516380 139118 7070 X false true X true false X 655945 688436 896701 849639 1080382 4171103 655945 688436 896701 849639 1080382 4171103 908706 3262397 1079 358 2160 75892 39143 118632 458 458 4290193 91858 0.76040 0.75930 X PART II, LINE 10 MISCELLANEOUS 458 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 9445 8357 1088 1088 1119398 7070 1200 8270 1111128 1111128 973210 1200 1200 972010 972010 FUNDRAISING EVE 239124 239124 377 3350 4670 239124 239124 377 3350 4670 8397 -8397 FORM 990 - ORGANIZATION'S MISSION 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. FORM 990, PAGE 2, PART III, LINE 4A 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 FORM 990, PAGE 6, PART VI, LINE 11B THE FORM 990 AND STATE INFORMATION RETURN IS DISTRIBUTED TO THE BOARD, WHO REVIEWS AND APPROVES GIVES ITS APPROVAL TO FILE. FORM 990, PAGE 6, PART VI, LINE 15A COMPENSATION IS SET BY BOARD OF DIRECTORS. ENTIRE BOARD REVIEWED A COMPARATIVE STUDY OF COMPENSATION PACKAGES OF NON-PROFIT ORGANIZATIONS IN NEW ENGLAND AND APPROVED THE PACKAGE. FORM 990, PAGE 6, PART VI, LINE 15B COMPENSATION IS SET BY BOARD OF DIRECTORS. ENTIRE BOARD REVIEWED A COMPARATIVE STUDY OF COMPENSATION PACKAGES OF NON-PROFIT ORGANIZATIONS IN NEW ENGLAND AND APPROVED THE PACKAGE. FORM 990, PAGE 6, PART VI, LINE 19 GOVERNING DOCUMENTS, CONFLICT OF INTEREST, AND FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST. NO REQUESTS WERE RECEIVED DURING THE YEAR. FORM 990, PART IX, LINE 11G CONTENT DEVELOPMENT ADVISORS 166,624 0 3,281 MARKETING 99,297 0 0 STRATEGIC ADVISORS 68,700 27,500 0 DATA ANALYTICS 28,000 0 0 OTHER CONTRACT SERVICES 4,600 1,629 0 TOTAL 367,221 29,129 3,281