2023-07-10T22:57:52-04:00 2022-12-31 463169148 DAVISKELLY LLP 42 MILL ROAD WILMINGTON MA 01887 990 2022-01-01 462614138 COURAGEOUS PARENTS NETWORKINC COUR 6175711779 21 ROCHESTER ROAD NEWTON MA 02458 BLYTH TAYLOR LORD EXECUTIVE DIRECTOR 6175711779 2023-07-09 true BLYTH LORD 999009999 false RANDALL S DAVIS P10427372 9787648966 2023-07-10 2022 2023-04-26 12:10:37Z BLYTH TAYLOR LORD 21 ROCHESTER ROAD NEWTON MA 02458 990261 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. 8 8 5 0 801517 896701 0 358 2160 -5098 75246 796777 974107 0 0 356785 342350 16700 1350 64058 437037 453827 810522 797527 -13745 176580 1218485 1359978 13421 13336 1205064 1346642 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 595156 IN 2022, CPN PRIORITIZED: 1.DEVELOPMENT OF THE JOURNEY MAP FOR FAMILIES OF CHILDREN WITH SERIOUS NEUROLOGICAL IMPAIRMENT 2.DEVELOPMENT OF CONTENT FOCUSED ON ISSUES OF HEALTH EQUITY AND BIAS 3.OUTREACH TO PEDIATRIC PROVIDERS, PATIENT DISEASE GROUPS AND THE RARE DISEASE INDUSTRY 4.DEVELOPMENT AND PRODUCTION OF ORIGINAL CONTENT AND PROGRAMMING FOR CAREGIVERS AND CLINICIANS SERVING SERIOUSLY ILL CHILDREN 5.DEVELOPMENT AND LAUNCH OF THE NEW CLINICIAN PORTAL ACTIVITIES AND ACCOMPLISHMENTS DURING THIS TIME (1)DIGITAL JOURNEY MAP FOR PARENTS AND PROVIDERS OF CHILDREN WITH SNI CONTENT DEVELOPMENT: DURING THE PAST YEAR, CPN HAS COMPLETED CONTENT DEVELOPMENT OF JOURNEY MAP FOR PARENTS AND PROVIDERS OF CHILDREN WITH SERIOUS NEUROLOGICAL IMPAIRMENT. THE TWO LEAD AUTHORS OF THE MEDICAL TRACK - DR JULIE HAUER AND CPN'S SENIOR PRODUCER AND (EXPERIENCED) PARENT, JENNIFER SIEDMAN -- COLLABORATED TO SHAPE THE MEDICAL INFORMATION INTO PARENT-FORWARD LANGUAGE. NINE PALLIATIVE-MINDED SPECIALISTS FROM HOSPITALS ACROSS THE COUNTRY, AS WELL AS TWO PARENTS OF CHILDREN WITH SNI REVIEWED THE DRAFTS, AND IT WAS ALL EDITED BY CPN'S DIRECTOR OF COMMUNICATIONS FOR CONSISTENCY. TWO PARENTS - CPN'S BLYTH LORD AND CONTRIBUTING PARENT ADVISOR, SARAH CASEY - ADAPTED CPN CONTENT FOR THE SOCIAL-EMOTIONAL TRACK AND CAROL TRAGER REVIEWED FOR CONSISTENCY. PLATFORM DEVELOPMENT: CPN'S LEAD DEVELOPER COMPLETED THE PROGRAMMING OF THE PUBLISHING PLATFORM, AS WELL AS DESIGN. LOOKING AHEAD - MAY-JUNE: FOLLOWING A WELL-RECEIVED PRESENTATION ABOUT THE JOURNEY MAP AT AAHPM IN MARCH 2023, CPN WILL BE BETA-TESTING OF THE TOOL WITH VOLUNTEER PARENTS AND CLINICIANS. WE ANTICIPATE LAUNCHING THE JOURNEY MAP NATIONALLY IN SEPTEMBER 2023. (2) DIVERSITY AND INCLUSION CONTENT "IN SPRING 2022, WE CONDUCTED TWO FOCUS GROUPS WITH BLACK AND HISPANIC PARENTS (ALL MOTHERS) OF CHILDREN. "IN NOVEMBER-MARCH, WE VIDEO INTERVIEWED FOUR AFRICAN-AMERICAN PARENTS AND THREE CLINICIANS OF COLOR, AND ARE PUBLISHING THEIR VIDEOS TO THE CPN LIBRARY. WE ARE FEATURING THEM SPECIFICALLY IN MONTHLY COMMUNICATIONS TO PARENT AND CLINICIAN MEMBERS, AND IN SPECIFIC PRESENTATIONS TO CLINICIAN AUDIENCES. THE THEME OF PARENT AGENCY AND ADVOCACY FOR PARENTS OF COLOR IS AN IMPORTANT THEME THAT COMES THROUGH IN BOTH THE PARENT AND CLINICIAN INTERVIEWS, AND WHERE POSSIBLE, CPN IS CONNECTING THE TWO PERSPECTIVES. FOR EXAMPLE, A PARENT OF COLOR WILL ACKNOWLEDGE THAT SHE FEELS SHE HAS TO BEHAVE A CERTAIN WAY FOR CLINICIANS TO LISTEN TO HER AND PROVIDE GOOD CARE TO HER CHILD, AND A PHYSICIAN WILL OBSERVE THAT THIS IS AN UNFAIR, UNHEALTHY AND SHAMEFUL BURDEN TO PUT ON THESE PARENTS WHO ARE ALREADY IN A VULNERABLE SITUATION. "LOOKING AHEAD: CPN WILL MEET WITH ITS EQUITY AND INCLUSION ADVISORY BOARD TO CONSIDER HOW WE MIGHT ADAPT THE PARENT AND CLINICIAN VIDEOS FOR USE IN CLINICIAN TRAINING. (3) ONGOING OUTREACH AND COMMUNICATIONS THE PRIMARY CHANNELS TO REACH PARENTS AND CAREGIVERS OF CHILDREN LIVING WITH SERIOUS ILLNESS IS THROUGH LIVE PRESENTATIONS TO CLINICIANS AND TO PATIENT ORGANIZATIONS, AND DIRECT TO INDIVIDUALS THROUGH EMAIL COMMUNICATIONS TO MEMBERSHIP AND VIA SOCIAL MEDIA. "IN AUGUST 2022, PEDIATRIC PSYCHOLOGIST CHRISSY SALLEY JOINED AS CPN'S DIRECTOR OF CLINICIAN OUTREACH AND ENGAGEMENT TO REACH MORE NON-PALLIATIVE CLINICIANS WITH CPN AS A RESOURCE TO 'HELP THEM BE A BETTER RESOURCE TO THEIR PATIENT FAMILIES.' DR. SALLEY AND EXECUTIVE DIRECTOR BLYTH LORD ARE WORKING TO BUILD COLLABORATIONS WITH PROFESSIONAL ORGANIZATIONS AS A CHANNEL TO REACH PHYSICIANS, NURSES, NPS, SOCIAL WORKERS AND PEDIATRIC PSYCHOLOGISTS. IN 2023, CPN HAS BECOME AN OFFICIAL LIAISON TO THE AAP'S SECTION ON HOSPICE AND PALLIATIVE MEDICINE. CPN'S DIRECTOR OF FAMILY AND INDUSTRY ENGAGEMENT, JENNIFER SIEDMAN, CONTINUES TO NETWORK WITH PATIENT DISEASE GROUPS, POSITIONING CPN AS A RESOURCE TO HELP THEM FURTHER SUPPORT THEIR PATIENT FAMILIES. ?CPN'S MONTHLY SOCIAL MEDIA EFFORTS ACROSS TWITTER, FACEBOOK, INSTAGRAM AND LINKEDIN HAVE CONTINUED AS WE EVOLVE OUR VOICE FOR 'THOUGHT LEADERSHIP- AND ENGAGEMENT. LIVE PRESENTATIONS - IN-PERSON AND VIA ZOOM 2022 PARMENTER PARENT 10 PARMENTER CLINICIAN 12/7/2022 COLUMBIA CRITICAL CARE, HOSPITAL MED, PALL CARE 32 12/5/2022 MSK PSYCHOSOCIAL TEAM 12 11/29/2022 ST. MARY'S HOSPITAL (MD'S AND NURSES INVITE, ONLY PSYCHOSOCIAL ATTENDED) 7 11/29/2022 CLINICAL TRIAL GUIDE (WEBSITE) 11/29/2022 DUCHENNE PARENT COMMUNITY 20 GLOBAL GENES BLOGS - 2 11/21/2022 ST. MARY'S HOSPITAL (ALL) 15 11/17/2022 ASGCT 32 11/16/2022 NATIONAL SOCIETY GENETIC COUNSELORS 60 11/20/2022 DIV. 54 PALL CARE SIG NEWSLETTER 110 11/10/2022 INPCS 52 10/27/2022 PEDIATRIC RESIDENTS - HOLTZ, MIAMI 30 10/11/2022 BRIDGES PROGRAM (TRANSITIONS TO ADULHOOD)20 9/23/2022 PEDIATRIC PSYCHOLOGY WEBINAR 80 9/23/2022 SIRIUSXM DOCTOR RADIO: KIDS??? 9/13/2022 GLOBAL GENES 120 7/7/2022 CURE SANFILIPPO 118 6/23/2022 CDLS 14 595156 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 21 0 5 true false false false false false false false false false false false false false false X 8 8 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 101928 0 13337 ERIC BARTHOLOMAE TREASURER 1.00 X X 0 0 0 VINNY CHIANG DIRECTOR 1.00 X 0 0 0 STEPHANIE CONNAUGHTON BOARD CHAIR 1.00 X X 0 0 0 TERRENCE FLOTTE DIRECTOR 1.00 X 0 0 0 ROB GO DIRECTOR 1.00 X 0 0 0 JENNY MCAULIFFE DIRECTOR 1.00 X 0 0 0 DIANE MEIER DIRECTOR 1.00 X 0 0 0 BOB SEARLE SECRETARY 1.00 X X 0 0 0 101928 13337 1 false false false 135569 761132 896701 2160 2160 91400 135569 16154 75246 974107 2160 X 115666 90536 7402 17728 198025 166904 11586 19535 2455 267 428 1760 26204 21689 1521 2994 28161 28161 1350 1350 340046 278575 59243 2228 490 35 455 6339 3645 1269 1425 31290 5966 21174 4150 2923 805 1900 218 8737 112 8625 31968 26622 1301 4045 3873 3873 797527 595156 138313 64058 214802 188764 819041 1044803 34500 34500 2917 2348 8146 5538 2626 2608 92153 64827 52446 22128 1218485 1359978 13421 13336 13421 13336 X 1014913 1222436 190151 124206 1205064 1346642 1218485 1359978 X 176580 -35002 X false true X true false X 879125 626283 655945 688436 896701 3746490 879125 626283 655945 688436 896701 3746490 762977 2983513 1250 7442 1079 358 2160 12289 378 378 3759157 91808 0.79370 0.77230 X PART II, LINE 10 MISCELLANEOUS 378 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 8146 5538 2608 2608 956459 -35002 1200 16154 -17648 974107 974107 814881 1200 16154 17354 797527 797527 SCHEDULE D, PAGE 4, PART XI, LINE 2D DIRECT EVENT EXPENSES 16,154 SCHEDULE D, PAGE 4, PART XII, LINE 2D DIRECT EVENT EXPENSES 16,154 FUNDRAISING EVE 226969 135569 91400 16154 226969 135569 91400 16154 16154 75246 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 IN 2022, CPN PRIORITIZED: 1.DEVELOPMENT OF THE JOURNEY MAP FOR FAMILIES OF CHILDREN WITH SERIOUS NEUROLOGICAL IMPAIRMENT 2.DEVELOPMENT OF CONTENT FOCUSED ON ISSUES OF HEALTH EQUITY AND BIAS 3.OUTREACH TO PEDIATRIC PROVIDERS, PATIENT DISEASE GROUPS AND THE RARE DISEASE INDUSTRY 4.DEVELOPMENT AND PRODUCTION OF ORIGINAL CONTENT AND PROGRAMMING FOR CAREGIVERS AND CLINICIANS SERVING SERIOUSLY ILL CHILDREN 5.DEVELOPMENT AND LAUNCH OF THE NEW CLINICIAN PORTAL ACTIVITIES AND ACCOMPLISHMENTS DURING THIS TIME (1)DIGITAL JOURNEY MAP FOR PARENTS AND PROVIDERS OF CHILDREN WITH SNI CONTENT DEVELOPMENT: DURING THE PAST YEAR, CPN HAS COMPLETED CONTENT DEVELOPMENT OF JOURNEY MAP FOR PARENTS AND PROVIDERS OF CHILDREN WITH SERIOUS NEUROLOGICAL IMPAIRMENT. THE TWO LEAD AUTHORS OF THE MEDICAL TRACK - DR JULIE HAUER AND CPN'S SENIOR PRODUCER AND (EXPERIENCED) PARENT, JENNIFER SIEDMAN -- COLLABORATED TO SHAPE THE MEDICAL INFORMATION INTO PARENT-FORWARD LANGUAGE. NINE PALLIATIVE-MINDED SPECIALISTS FROM HOSPITALS ACROSS THE COUNTRY, AS WELL AS TWO PARENTS OF CHILDREN WITH SNI REVIEWED THE DRAFTS, AND IT WAS ALL EDITED BY CPN'S DIRECTOR OF COMMUNICATIONS FOR CONSISTENCY. TWO PARENTS - CPN'S BLYTH LORD AND CONTRIBUTING PARENT ADVISOR, SARAH CASEY - ADAPTED CPN CONTENT FOR THE SOCIAL-EMOTIONAL TRACK AND CAROL TRAGER REVIEWED FOR CONSISTENCY. PLATFORM DEVELOPMENT: CPN'S LEAD DEVELOPER COMPLETED THE PROGRAMMING OF THE PUBLISHING PLATFORM, AS WELL AS DESIGN. LOOKING AHEAD - MAY-JUNE: FOLLOWING A WELL-RECEIVED PRESENTATION ABOUT THE JOURNEY MAP AT AAHPM IN MARCH 2023, CPN WILL BE BETA-TESTING OF THE TOOL WITH VOLUNTEER PARENTS AND CLINICIANS. WE ANTICIPATE LAUNCHING THE JOURNEY MAP NATIONALLY IN SEPTEMBER 2023. (2) DIVERSITY AND INCLUSION CONTENT "IN SPRING 2022, WE CONDUCTED TWO FOCUS GROUPS WITH BLACK AND HISPANIC PARENTS (ALL MOTHERS) OF CHILDREN. "IN NOVEMBER-MARCH, WE VIDEO INTERVIEWED FOUR AFRICAN-AMERICAN PARENTS AND THREE CLINICIANS OF COLOR, AND ARE PUBLISHING THEIR VIDEOS TO THE CPN LIBRARY. WE ARE FEATURING THEM SPECIFICALLY IN MONTHLY COMMUNICATIONS TO PARENT AND CLINICIAN MEMBERS, AND IN SPECIFIC PRESENTATIONS TO CLINICIAN AUDIENCES. THE THEME OF PARENT AGENCY AND ADVOCACY FOR PARENTS OF COLOR IS AN IMPORTANT THEME THAT COMES THROUGH IN BOTH THE PARENT AND CLINICIAN INTERVIEWS, AND WHERE POSSIBLE, CPN IS CONNECTING THE TWO PERSPECTIVES. FOR EXAMPLE, A PARENT OF COLOR WILL ACKNOWLEDGE THAT SHE FEELS SHE HAS TO BEHAVE A CERTAIN WAY FOR CLINICIANS TO LISTEN TO HER AND PROVIDE GOOD CARE TO HER CHILD, AND A PHYSICIAN WILL OBSERVE THAT THIS IS AN UNFAIR, UNHEALTHY AND SHAMEFUL BURDEN TO PUT ON THESE PARENTS WHO ARE ALREADY IN A VULNERABLE SITUATION. "LOOKING AHEAD: CPN WILL MEET WITH ITS EQUITY AND INCLUSION ADVISORY BOARD TO CONSIDER HOW WE MIGHT ADAPT THE PARENT AND CLINICIAN VIDEOS FOR USE IN CLINICIAN TRAINING. (3) ONGOING OUTREACH AND COMMUNICATIONS THE PRIMARY CHANNELS TO REACH PARENTS AND CAREGIVERS OF CHILDREN LIVING WITH SERIOUS ILLNESS IS THROUGH LIVE PRESENTATIONS TO CLINICIANS AND TO PATIENT ORGANIZATIONS, AND DIRECT TO INDIVIDUALS THROUGH EMAIL COMMUNICATIONS TO MEMBERSHIP AND VIA SOCIAL MEDIA. "IN AUGUST 2022, PEDIATRIC PSYCHOLOGIST CHRISSY SALLEY JOINED AS CPN'S DIRECTOR OF CLINICIAN OUTREACH AND ENGAGEMENT TO REACH MORE NON-PALLIATIVE CLINICIANS WITH CPN AS A RESOURCE TO 'HELP THEM BE A BETTER RESOURCE TO THEIR PATIENT FAMILIES.' DR. SALLEY AND EXECUTIVE DIRECTOR BLYTH LORD ARE WORKING TO BUILD COLLABORATIONS WITH PROFESSIONAL ORGANIZATIONS AS A CHANNEL TO REACH PHYSICIANS, NURSES, NPS, SOCIAL WORKERS AND PEDIATRIC PSYCHOLOGISTS. IN 2023, CPN HAS BECOME AN OFFICIAL LIAISON TO THE AAP'S SECTION ON HOSPICE AND PALLIATIVE MEDICINE. CPN'S DIRECTOR OF FAMILY AND INDUSTRY ENGAGEMENT, JENNIFER SIEDMAN, CONTINUES TO NETWORK WITH PATIENT DISEASE GROUPS, POSITIONING CPN AS A RESOURCE TO HELP THEM FURTHER SUPPORT THEIR PATIENT FAMILIES. ?CPN'S MONTHLY SOCIAL MEDIA EFFORTS ACROSS TWITTER, FACEBOOK, INSTAGRAM AND LINKEDIN HAVE CONTINUED AS WE EVOLVE OUR VOICE FOR 'THOUGHT LEADERSHIP- AND ENGAGEMENT. LIVE PRESENTATIONS - IN-PERSON AND VIA ZOOM 2022 PARMENTER PARENT 10 PARMENTER CLINICIAN 12/7/2022 COLUMBIA CRITICAL CARE, HOSPITAL MED, PALL CARE 32 12/5/2022 MSK PSYCHOSOCIAL TEAM 12 11/29/2022 ST. MARY'S HOSPITAL (MD'S AND NURSES INVITE, ONLY PSYCHOSOCIAL ATTENDED) 7 11/29/2022 CLINICAL TRIAL GUIDE (WEBSITE) 11/29/2022 DUCHENNE PARENT COMMUNITY 20 GLOBAL GENES BLOGS - 2 11/21/2022 ST. MARY'S HOSPITAL (ALL) 15 11/17/2022 ASGCT 32 11/16/2022 NATIONAL SOCIETY GENETIC COUNSELORS 60 11/20/2022 DIV. 54 PALL CARE SIG NEWSLETTER 110 11/10/2022 INPCS 52 10/27/2022 PEDIATRIC RESIDENTS - HOLTZ, MIAMI 30 10/11/2022 BRIDGES PROGRAM (TRANSITIONS TO ADULHOOD)20 9/23/2022 PEDIATRIC PSYCHOLOGY WEBINAR 80 9/23/2022 SIRIUSXM DOCTOR RADIO: KIDS??? 9/13/2022 GLOBAL GENES 120 7/7/2022 CURE SANFILIPPO 118 6/23/2022 CDLS 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 170,959 0 2,228 MARKETING ADVIISORS 100,009 0 0 STRATEGIC ADVISORS 7,607 0 0 PARENT PROVIDER SURVEY 0 26,000 0 STATEGIC ADVISORS 0 31,975 0 OTHER CONTRACT SERVICES 0 1,268 0 TOTAL 278,575 59,243 2,228 FORM 990, PART XI, LINE 9 DIRECT EVENT EXPENSES 16,154 DIRECT EVENT EXPENSES -16,154