Courageous Parents Network

An audio recording of CPN's In the Zoom Room event on Tending the Adult Relationship with families and psychologist Nancy Frumer-Styron.

CPN’s Blyth Lord talks with Carla, the mother of Talia who had infantile Tay-Sachs and died shortly before her second birthday, and Robin, Carla’s mother, Talia's grandmother. Theirs is a particularly close relationship

In this episode, CPN's Jennifer Siedman talks with her son Noah about the days leading up to Noah's brother, Ben's passing. They explore grief, the pressures siblings feel and creating a new family dynamic.

In this episode, Amy and Ray Miller , parents to Dan, who had Hunter Syndrome and Hailey join CPN’s Jennifer Siedman to talk about surrounding their son Dan with love, family and friends during his final days, their identity as parents and being happy again.

CPN's interview with Dr. Kate Davidoff on her journey to becoming an attending pediatric palliative care doctor: what drew her into medicine and then working with seriously ill children and their families.

In this episode, CPN’s Jennifer Siedman talks with Chelsey Klenke Robertson about the challenges and gifts of loving Craig, her brother who had Hunter’s Syndrome(MPS II). Her mother Kris joins them to talk about Craig’s final days, the grieving process and how Craig’s legacy has impacted their careers.

In this episode, CPN’s Jennifer Siedman talks with Grey Chapin, founder of the BLAIR Connection, a digital resource to support siblings as they experience the challenges of having a terminally ill brother or sister. Jennifer is the mother to three – Noah and Isabelle, and their brother Ben, who died in 2014 from Sanfilippo Syndrome. Grey is the younger sister of Blair, who also had Sanfilippo Syndrome and died in 2017.

Patient disease advocacy organizations are united in the common goal of improving the lives of those living with the rare diseases they represent. For some in the community, the science has advanced and treatments are available. For others, a treatment is still off on the horizon. In this episode, CPN’s Jennifer Siedman talks with Leslie Urdanta, Family Support Coordinator for the National MPS Society, a community for individuals and families living with MPS and ML about how the Society supports its families through the relatively new landscape of clinical trials; managing expectations, tempering frustrations, lifting up its members during times of disappointment, celebrating with them when advancements happen and always keeping the community united.

CPN's Jennifer Siedman talks with Diana Pangonis, Director of Family Services for NTSAD. For the very first time since its beginning over 60 years ago, the NTSAD community has or is anticipating early stage clinical trials for its diseases, Tay-Sachs, GM-1, Sandhoff, and Canavan. It's a new landscape for the NTSAD families. Jennifer talks with Dianoa about what supporting families through the clinical trial experience looks like.

Today the landscape for families of children diagnosed with rare and fatal conditions looks very different than it did even a decade ago.

New therapies and treatments are here, including gene therapy.

But what do the innovations mean for parents who may be faced with the opportunity to enroll their child in an early stage clinical trial which is, at its core, an experiment?

In this episode, CPN’s Blyth Lord, whose daughter did not live to see the new possibilities, talks with Dawn Mariano, a mom who will be facing such a decision for her baby daughter.