2024-11-04T11:11:33-05:00 2023-12-31 463169148 DAVISKELLY LLP 42 MILL ROAD WILMINGTON MA 01887 990 2023-01-01 462614138 COURAGEOUS PARENTS NETWORKINC COUR 6175711779 21 ROCHESTER ROAD NEWTON MA 02458 BLYTH TAYLOR LORD EXECUTIVE DIRECTOR 6175711779 2024-01-11 true false RANDALL S DAVIS P10427372 9787648966 2024-11-04 2023 2024-10-15 13:58:12Z BLYTH TAYLOR LORD 21 ROCHESTER ROAD NEWTON MA 02458 925989 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 896701 849639 0 2160 75892 75246 -6114 974107 919417 0 0 342350 374413 1350 0 48114 453827 533385 797527 907798 176580 11619 1359978 1352065 13336 23936 1346642 1328129 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 686570 2023 ACCOMPISHMENTS: LAUNCHING JOURNEYMAP 1)PRESENTATION OF THE JOURNEY MAP AT AAHPM MARCH 2023 AND NHPCO'S VIRTUAL EDUCATIONAL CONFERENCE. 2)BETA-TESTING OF THE JOURNEY MAP WITH A COLLECTION OF EXEMPLARY END-USERS RECRUITMENT OF 38 TESTERS (12 CLINICIANS, 7 PATIENT DISEASE GROUPS; 19 PARENTS - APRIL-MAY 2023) DESIGN OF THE BETA-TEST TOOL - SURVEY DISTRIBUTED VIA SURVEYMONKEY (MAY 2023) DISTRIBUTION OF THE SURVEY TO 38 TESTERS - (MAY 2023) COLLECTION AND DISTILLATION OF FEEDBACK FROM SURVEY (MAY-JUNE 2023) 3)PRE-LAUNCH ACTIVITIES -INTEGRATION OF SURVEY FEEDBACK, WHICH CONSISTED PRIMARILY OF EDITING CONTENT AND REPUBLISHING IN THE CONTENT MANAGEMENT SYSTEM -RECORDING OF AUDIO FILES TO ACCOMPANY ALL TEXT FIELDS TO SUPPORT CAREGIVERS LESS PROFICIENT IN READING OR THOSE WHO PREFER TO LISTEN -PRODUCTION OF INTRO VIDEO, INCLUDING ANIMATION -CREATION OF MESSAGING AND POSITIONING MATERIALS -INCLUDING OF AUDIO/LISTEN FEATURE AND RECORDING OF AUDIO FILES IN ENGLISH FOR EVERY INFORMATION PAGE 4)LAUNCH OF NEUROJOURNEY.ORG - NOVEMBER 1, 2023 5)OUTREACH AND COMMUNICATIONS - ONGOING -INCLUSION OF LINKS TO NEUROJOURNEY.ORG IN EACH SEMI-MONTHLY EMAIL COMMUNICATION TO CLINICIAN AND CAREGIVER MEMBERS (APPROXIMATELY 7000 INDIVIDUALS TOTAL) -DRUMBEAT ABOUT NEUROJOURNEY ON CPN'S SOCIAL MEDIA PLATFORMS, INCLUDING LINKEDIN, INSTAGRAM AND FACEBOOK AND TWITTER -OPENPEDIATRICS COMPLEX CARE PODCAST FEATURING DR. JULIE HAUER AND CPN'S JENNIFER SIEDMAN -2 DEMO PRESENTATIONS ON ZOOM BY CPN STAFF TO A TOTAL OF 38 PARENTS AND CLINICIANS -DIRECT PRESENTATIONS - VIA ZOOM - TO HOSPITAL-BASED CLINICIAN GROUPS. AS OF 2/14/24, CPN HAS PRESENTED DIRECTLY TO 260 PEDIATRIC CLINICIANS, INCLUDING NURSE CASE MANAGERS, COMPLEX CARE CLINICIANS, PALLIATIVE CARE CLINICIANS, NEUROLOGISTS AND TWO GROUPS OF PEDIATRIC RESIDENTS: DIVERSIFYING CPN'S DEMOGRAPHIC, CULTURAL, AND GEOGRAPHICAL REACH. -DIVERSIFYING THE VOICES ON THE CPN PLATFORM (VIDEOS, BLOG AUTHORS) AND IN LIVE PRESENTATIONS THAT WE GIVE. DIVERSITY ACROSS RACE (1) AND GEOGRAPHICAL REACH (2.) THIS IS DIRECTED AT BELONGING -ASSESSING RELEVANCE OF CURRENT CPN MATERIALS TO A WIDER RANGE OF FAMILIES - RACE; AND WHAT NEEDS AND EXPERIENCES, ROOTED IN SYSTEMIC RACISM, EXIST THAT CPN 'COULD' DO SOMETHING TO ADDRESS (BEING TRUE TO OUR MODEL). WE ARE WORKING WITH HEALTH RESOURCES IN ACTION TO INTERVIEW PARENTS OF COLOR ABOUT THIS. -ASSESSING ACCESSIBILITY OF CPN'S CONTENT AND WHAT CAN WE DO TO MAKE IT MORE ACCESSIBLE -- LANGUAGE, INFORMATION GRAPHICS, SUBTITLES ON VIDEOS ETC. -ULTIMATELY, WE WILL LIKELY HIRE AN EXPERIENCED PERSON FROM THE BIPOC COMMUNITY (PARENT OR CLINICIAN) TO LEAD THIS PART OF THE PROGRAMMING. -ADDING A CLINICIAN OF COLOR WHO IS PRIORITIZING HEALTH EQUITY IN THEIR WORK, TO THE BOARD. SCALING BY DEVELOPING A BROADER AND LARGER NUMBER OF CAREGIVERS ABLE TO (RE)PRESENT CPN. LAUNCHED THE PARENT CHAMPION PROGRAM/BLOGGER IN RESIDENCE -OCTOBER TRAINING OF 6 CHAMPIONS PLUS 2 FORMER BLOGGERS IN RESIDENCE INCLUDED FORMAL ADVOCACY STORYTELLING AND PRESENTATION AT MGH. -PARENT CHAMPIONS HAVE ALREADY PARTICIPATED IN 2 PRESENTATIONS; 1 PODCAST -PARENT CHAMPION PROGRAM WILL BE THE FOCUS OF GIVING TUESDAY CAMPAIGN PRESENTATIONS 12/10/23 MOTT CHILDREN'S PEDS RESIDENTS 25 12/1/23 PEDIPALS 11 11/17/23 CT PEDIATRIC PALLIATIVE CARE COALITION (BUILIDING) AT HOLE IN THE WALL 25 11/16/23 HEBREW COLLEGE: SPIRITUAL COUNSELING SEMINAR 10 11/7/23 ST. LOUIS PFAC 15 10/31/23 PHOENIX CHILDREN'S 119 10/26/23 UW PEDIATRIC GRAND ROUNDS 95 10/25/23 NYC PALLIATIVE CARE COALITION 10 10/6/23 LEUKEMIA & LYMPHOMA SOCIETY - INFORMATION RESOURCE CENTER STAFF 24 10/4/23 RWJ BARNABAS PRIMARY PEDIATRIC PALL CARE EDUCATION TRAINING, COHORT 326 9/21/23CLEVELAND CLINIC COMPLEX CARE 14 686570 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 20 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 105213 0 32009 ZACH BREWER ENGINEER 40.00 X 115139 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 220352 32009 2 false false false 269920 579719 849639 75892 75892 269920 6572 -6572 OTHER REVENUE 458 458 458 919417 458 75892 X 139567 104119 21651 13797 206632 188779 17853 28214 26142 855 1217 30332 30332 362397 296470 59746 6181 155 155 9715 2173 3845 3697 61073 42672 14709 3692 5320 4426 879 15 6648 5335 1313 18757 16299 796 1662 4488 4488 BAD DEBT 34500 34500 907798 686570 173114 48114 188764 296510 1044803 1021137 34500 2348 1624 8146 7368 2608 778 64827 26816 22128 5200 1359978 1352065 13336 17936 6000 13336 23936 X 1222436 1289004 124206 39125 1346642 1328129 1359978 1352065 11619 -30132 X false true X true false X 626283 655945 688436 896701 849639 3717004 626283 655945 688436 896701 849639 3717004 828055 2888949 7442 1079 358 2160 75892 86931 378 458 836 3804771 92236 0.75930 0.79370 X PART II, LINE 10 MISCELLANEOUS 836 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 8146 7368 778 778 890485 -30132 1200 -28932 919417 919417 908998 1200 1200 907798 907798 FUNDRAISING EVE 269920 269920 104 1575 4893 269920 269920 104 1575 4893 6572 -6572 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 2023 ACCOMPISHMENTS: LAUNCHING JOURNEYMAP 1)PRESENTATION OF THE JOURNEY MAP AT AAHPM MARCH 2023 AND NHPCO'S VIRTUAL EDUCATIONAL CONFERENCE. 2)BETA-TESTING OF THE JOURNEY MAP WITH A COLLECTION OF EXEMPLARY END-USERS RECRUITMENT OF 38 TESTERS (12 CLINICIANS, 7 PATIENT DISEASE GROUPS; 19 PARENTS - APRIL-MAY 2023) DESIGN OF THE BETA-TEST TOOL - SURVEY DISTRIBUTED VIA SURVEYMONKEY (MAY 2023) DISTRIBUTION OF THE SURVEY TO 38 TESTERS - (MAY 2023) COLLECTION AND DISTILLATION OF FEEDBACK FROM SURVEY (MAY-JUNE 2023) 3)PRE-LAUNCH ACTIVITIES -INTEGRATION OF SURVEY FEEDBACK, WHICH CONSISTED PRIMARILY OF EDITING CONTENT AND REPUBLISHING IN THE CONTENT MANAGEMENT SYSTEM -RECORDING OF AUDIO FILES TO ACCOMPANY ALL TEXT FIELDS TO SUPPORT CAREGIVERS LESS PROFICIENT IN READING OR THOSE WHO PREFER TO LISTEN -PRODUCTION OF INTRO VIDEO, INCLUDING ANIMATION -CREATION OF MESSAGING AND POSITIONING MATERIALS -INCLUDING OF AUDIO/LISTEN FEATURE AND RECORDING OF AUDIO FILES IN ENGLISH FOR EVERY INFORMATION PAGE 4)LAUNCH OF NEUROJOURNEY.ORG - NOVEMBER 1, 2023 5)OUTREACH AND COMMUNICATIONS - ONGOING -INCLUSION OF LINKS TO NEUROJOURNEY.ORG IN EACH SEMI-MONTHLY EMAIL COMMUNICATION TO CLINICIAN AND CAREGIVER MEMBERS (APPROXIMATELY 7000 INDIVIDUALS TOTAL) -DRUMBEAT ABOUT NEUROJOURNEY ON CPN'S SOCIAL MEDIA PLATFORMS, INCLUDING LINKEDIN, INSTAGRAM AND FACEBOOK AND TWITTER -OPENPEDIATRICS COMPLEX CARE PODCAST FEATURING DR. JULIE HAUER AND CPN'S JENNIFER SIEDMAN -2 DEMO PRESENTATIONS ON ZOOM BY CPN STAFF TO A TOTAL OF 38 PARENTS AND CLINICIANS -DIRECT PRESENTATIONS - VIA ZOOM - TO HOSPITAL-BASED CLINICIAN GROUPS. AS OF 2/14/24, CPN HAS PRESENTED DIRECTLY TO 260 PEDIATRIC CLINICIANS, INCLUDING NURSE CASE MANAGERS, COMPLEX CARE CLINICIANS, PALLIATIVE CARE CLINICIANS, NEUROLOGISTS AND TWO GROUPS OF PEDIATRIC RESIDENTS: DIVERSIFYING CPN'S DEMOGRAPHIC, CULTURAL, AND GEOGRAPHICAL REACH. -DIVERSIFYING THE VOICES ON THE CPN PLATFORM (VIDEOS, BLOG AUTHORS) AND IN LIVE PRESENTATIONS THAT WE GIVE. DIVERSITY ACROSS RACE (1) AND GEOGRAPHICAL REACH (2.) THIS IS DIRECTED AT BELONGING -ASSESSING RELEVANCE OF CURRENT CPN MATERIALS TO A WIDER RANGE OF FAMILIES - RACE; AND WHAT NEEDS AND EXPERIENCES, ROOTED IN SYSTEMIC RACISM, EXIST THAT CPN 'COULD' DO SOMETHING TO ADDRESS (BEING TRUE TO OUR MODEL). WE ARE WORKING WITH HEALTH RESOURCES IN ACTION TO INTERVIEW PARENTS OF COLOR ABOUT THIS. -ASSESSING ACCESSIBILITY OF CPN'S CONTENT AND WHAT CAN WE DO TO MAKE IT MORE ACCESSIBLE -- LANGUAGE, INFORMATION GRAPHICS, SUBTITLES ON VIDEOS ETC. -ULTIMATELY, WE WILL LIKELY HIRE AN EXPERIENCED PERSON FROM THE BIPOC COMMUNITY (PARENT OR CLINICIAN) TO LEAD THIS PART OF THE PROGRAMMING. -ADDING A CLINICIAN OF COLOR WHO IS PRIORITIZING HEALTH EQUITY IN THEIR WORK, TO THE BOARD. SCALING BY DEVELOPING A BROADER AND LARGER NUMBER OF CAREGIVERS ABLE TO (RE)PRESENT CPN. LAUNCHED THE PARENT CHAMPION PROGRAM/BLOGGER IN RESIDENCE -OCTOBER TRAINING OF 6 CHAMPIONS PLUS 2 FORMER BLOGGERS IN RESIDENCE INCLUDED FORMAL ADVOCACY STORYTELLING AND PRESENTATION AT MGH. -PARENT CHAMPIONS HAVE ALREADY PARTICIPATED IN 2 PRESENTATIONS; 1 PODCAST -PARENT CHAMPION PROGRAM WILL BE THE FOCUS OF GIVING TUESDAY CAMPAIGN PRESENTATIONS 12/10/23 MOTT CHILDREN'S PEDS RESIDENTS 25 12/1/23 PEDIPALS 11 11/17/23 CT PEDIATRIC PALLIATIVE CARE COALITION (BUILIDING) AT HOLE IN THE WALL 25 11/16/23 HEBREW COLLEGE: SPIRITUAL COUNSELING SEMINAR 10 11/7/23 ST. LOUIS PFAC 15 10/31/23 PHOENIX CHILDREN'S 119 10/26/23 UW PEDIATRIC GRAND ROUNDS 95 10/25/23 NYC PALLIATIVE CARE COALITION 10 10/6/23 LEUKEMIA & LYMPHOMA SOCIETY - INFORMATION RESOURCE CENTER STAFF 24 10/4/23 RWJ BARNABAS PRIMARY PEDIATRIC PALL CARE EDUCATION TRAINING, COHORT 326 9/21/23CLEVELAND CLINIC COMPLEX CARE 14 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 155,407 0 6,181 MARKETING/ PROGRAM ADVISORS 112,313 0 0 STRATEGIC ADVISORS 0 29,000 0 DATA ANALYTICS 28,750 0 0 DIVERSITY EQUITY AND INCLUSIO 0 28,500 0 OTHER CONTRACT SERVICES 0 2,246 0 TOTAL 296,470 59,746 6,181