Compelling and compassionate, the Courageous Parents Network core staff speak to the lived experience of patient families with a unique combination of authority and sensitivity. All bereaved parents and/or pediatric palliative care professionals, they are conversant in the language of serious, rare and fatal conditions–and how a devastating diagnosis, the illness journey, and bereavement affect the family and the caregiver-provider relationship.
In addition to the options below, CPN convenes parent/caregiver members of the Network for facilitated panel discussions on a wide variety of topics. Please inquire.
To engage a Courageous Parents Network speaker, contact us.
- Bringing the Patient/Family Voice Safely into the Room
- Not Just at the Bedside: Harnessing the Power of the Patient and Family Voice in Pediatric Educational Activities Outside of the Clinical Care Environment
- We Should Talk: Advance Care Planning with Children and Families, presented with Dr. Patricia O’Malley, MassGeneral Hospital for Children
- Accompanying You Accompanying Families of Seriously Ill Children
- Introduction to the Lived Family Experience for New Pediatric Providers
- The Case for Pediatric Palliative Care: The Family Perspective
- What Parents Want You to Know About Making Tough Decisions and Choices
- What do Families Need? Bridging the Gaps to Empower and Support Families of Seriously Ill Children
For patient families and disease groups
Workshops, panels, presentations and Facebook Live events on topics relating to anticipatory grief, advance care planning, pediatric palliative care, and bereavement
Blyth Taylor Lord, Founder and Executive Director
Blyth founded Courageous Parents Network in 2014 and has since worked full-time with leaders in pediatric palliative care—doctors, nurses and nurse practitioners, social workers, patient advocacy groups, palliative and hospice care providers—as well as with bereaved families, and families whose children are currently living with life-limiting illness. She serves on the board of National Tay-Sachs and Allied Diseases Association, where she helps oversee NTSAD’s family support services, and as co-chair of the Parent Working Group for the American Academy of Pediatrics’ Section on Hospice and Palliative Medicine. More about Blyth>>
Janet Duncan, MSN, CNP, Director of Medical Provider Outreach
Janet Duncan, a Certified Pediatric Nurse Practitioner, helped found the Pediatric Advanced Care Team (PACT) of Dana-Farber Cancer Institute and Boston Children’s Hospital. She worked as a bedside nurse and educator with families who had children diagnosed with cancer and, later in her palliative care role, with families of children with diverse diagnoses of a serious illness. She continues to feel passion and find meaning in supporting families and children through her work with CPN.
Kerri Padgett, Community Manager
Kerri worked with children with complex medical needs for many years before becoming a parent to one herself. During her son’s short life, Kerri focused on quality of life for her son and became heavily involved in the many facets of the palliative care community. She has remained a part of this community through her work as a pediatric massage therapist, blogger and advocate for families of children with complex medical needs. Kerri believes strongly in the efficacy of whole family wellness and peer support surrounding end-of-life care for a child. Her personal experience gives her relevant perspective that she is always happy to share with others. More about Kerri>>
Jennifer Siedman, Patient Disease Outreach Coordinator
The co-founder with her husband of Ben’s Dream-Sanfilippo Research Foundation, founded to honor their son Benjamin, Jennifer has worked with researchers, patient advocacy groups and foundations worldwide to fund and advance gene therapy now in clinical trials in the U.S., Spain and Australia. Her commitment to advocating for children with special needs has also driven her 15-year career as a development professional and consultant. Jennifer has been recognized by Global Genes RARE Champion of Hope and the Boston Celtics Heroes Among Us awards for her contributions. She became part of the Courageous Parents Network family when she and her husband shared their story in a CPN video, and she served on the CPN Parent Advisory board before joining the staff. More about Jennifer>>
Pediatric Grand Rounds: Cincinnati Children’s Hospital, Cleveland Clinic Children’s Hospital, Rainbow Babies Hospital, Boston Medical Center, MassGeneral Hospital for Children, Children’s Hospital at Dartmouth-Hitchcock, Hasbro Children’s Hospital, Eastern Maine Medical Center, Boston Children’s Hospital
Interdisciplinary Pediatric Provider Teams: Akron Children’s Hospital, Nationwide children’s Hospital, Cleveland Clinic Children’s Hospital, UMass Medical School, Pediatric Chaplaincy Network
Industry (Biotech): Genzyme Sanofi RARE Disease Day (featured speaker) and RARE Disease Business Development Team, Agios Pharmaceuticals, Blue Cross-Blue Shield of Massachusetts, Uniqure RARE Disease Day (featured speaker)
Patient Disease and Interest Groups: Batten’s Disease Family Conference, National MPS Society Cycle Conference, National Tay-Sachs and Allied Diseases, New England Regional Genetics Group, Johns Hopkins/NIH genetic counselors, Hebrew College
Courageous Parents Network Community: Live Facebook events: with CPN Content Director Nancy Frumer-Styron, LICSW and CPN’s Kerri Padgett about bereavement; Answering the Question, “How Many Children Do You Have?” with two CPN parents; Understanding Medical Orders with a PediPall Nurse and mother; etc.