Blyth Taylor Lord, Founder and Executive Director
The origins of Courageous Parents Network lies in the cumulative experience of bereaved parent and pediatric palliative care advocate Blyth Taylor Lord. Following her daughter Cameron’s death in 2001 from Tay-Sachs, Blyth offered her perspective on the needs of families caring for children with life-limiting illness and how providers can best meet these needs, representing the parent perspective on panels and in workshops with pediatric residents and specialists. Then, drawing on this experience and more than 20 years as a television producer (ABC News, WGBH), she produced an award-winning film with the American Academy of Pediatrics to help train doctors in how to work with families from the time of diagnosis through to the end of life.
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.
Kerri Padgett, Community Manager
Kerri worked with children with complex medical needs for many years before becoming a parent to one herself. Her son Kai was born with an inoperable brain tumor that took his life just after his second birthday. During Kai’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. Since Kai’s passing, Kerri 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.
Jennifer Siedman, Patient Disease Outreach Coordinator
Shortly after her second child, Ben, was diagnosed with Sanfilippo Syndrome, Jennifer and herhusband formed Ben’s Dream: the Sanfilippo Research Foundation. As president of the Foundation, she 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. Sadly, these efforts did not come to fruition in time for Ben, who passed away in 2014.
Jennifer’s commitment to advocating for children with special needs has also driven her 15-year career as a development professional and consultant. She has been recognized by Global Genes RARE Champion of Hope and the Boston Celtics Heroes Among Us awards for her contributions, and has spoken about the patient journey at Massachusetts General Hospital, New England Regional Genetics Group, UMass Boston Medical Center and at a number of biotech companies. 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. Jennifer’s recent work developing Guided Pathways draws upon her EdM and middle school teaching experience.
Janet Duncan, MSN, CPNP, Director of Medical Provider Outreach
Janet is a Certified Pediatric Nurse Practitioner who helped found the Pediatric Advanced Care Team 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.
Carol Trager, Communications and Marketing
Carol’s passion is the intersection of business and marketing/communications strategy. She has worked in a variety of industries, but for the past 15 years has focused on the nonprofit sector and social enterprise.
As a consultant, Carol has advised clients on a wide range of initiatives, from strategic planning to branding to thought leadership. She was introduced to Courageous Parents Network through a colleague, and works closely with the team to develop platforms for increasing the organization’s visibility and communicating its unique value. Her experience also includes roles as a consultant to and senior director at The Bridgespan Group, where she led marketing and communications efforts across Bridgespan and its Bridgestar initiative, and at the Jewish Community Centers (JCC) of Greater Boston, where she created and implemented an integrated brand identity, led an organization-wide effort to re-think the JCC’s vision, and developed a strategic business plan to meet contemporary needs and expectations. Carol further applies her creative energy as an art student (primarily drawing), another passion that she has pursued since childhood.
Nancy Frumer-Styron, PsyD, JD, Content Director
Dr. Frumer-Styrom is on-camera psychologist for the Courageous Parent Network’s parent videos, ensuring that parents are hearing what they need and are receiving expert information, suggestions, and guidance. Dr. Frumer Styron is a licensed psychologist who specializes in therapy for children with life-limiting and life-threatening illness. Her focus has been on anticipatory grief for all members of the family. Nancy was a staff psychologist and training director at Dana-Farber Cancer Institute for twenty-three years and until recently, was the Clinical Director of the pediatric division in the Department of Psychosocial Oncology and Palliative Care at Dana-Farber/Children’s Hospital Cancer Center. She now has a private practice in Lexington, MA, and is also the Clinical Director for The Children’s Room, the bereavement support program for children and parents in Arlington, MA.
Bill Parker, Cameraman and Editor, Hindsight Media
Billy has been working in the film and video industry for over thirty years. He developed his skills as an oral historian at Chelsea High School where he taught film-making to students from around the world. He helped them craft their own personal stories using video as a medium. Creating personal histories for families and organizations was a natural progression and he has been doing that in the Boston area for the last 15 years with his company Hindsight Media. His daughter is a cancer survivor and his involvement with palliative care is at a personal as well as a professional level. In 2012, he and Blyth teamed up to help create a video to help families of children with life-threatening illnesses, Parenting a Child with Life-Limiting Illness. So it began and he hasn’t looked back.
Zach Brewer, Web Developer and Platform Engineer
Courageous Parents Network’s content management system and site is overseen by developer extraordinaire Zach Brewer. We could not do this without him!
Sarah Casey, Editorial Associate
Sarah Casey and her husband Steve are parents to one wonderful daughter, Emerson. Emerson died in 2016, at 16 months old, from Type 2 Gaucher’s Disease. Shortly after her diagnosis, they were introduced to Courageous Parents Network by the Palliative Care team at Boston Children’s Hospital. “Being connected to CPN gave us a place where we could connect with, and learn from other parents who understood what we were going through. We found hope, and were empowered to give our daughter the very best life possible. It’s my wish that every parent caring for a child with a life-limiting illness, would have this type of support. As a member of the CPN Parent Advisory Board, I’m honored to help make this happen.”