Courageous Parents Network (CPN) is a 501(c)(3) whose mission is to empower, support and equip families and providers caring for children with serious illness. CPN’s vision promotes the family's journey as one in which they have confidence in their ability to be the best caregivers they can possibly be, resulting in minimal regret and maximal healing; and that pediatric medical providers feel increased success in delivering family-centered care.
CPN was founded in 2013, by Blyth Lord—whose daughter and nephew died from Tay-Sachs disease—to harness the power of web and mobile digital media platforms to offer our constituents information, guidance, tools, and community support. The organization distributes 500+ original short videos, a robust parent blog, curated content modules (Guided Pathways) and downloadable guides on topics spanning the wide range of issues families confront, including coping with the diagnosis, understanding anticipatory grief, working with the medical team, keeping their family strong, making difficult decisions about medical interventions, transitioning to end-of-life and coping following their child’s death. Much of this content is also offered in Spanish.
In addition, CPN maintains a Provider Portal replete with content to help healthcare providers better understand the lived family experience, and support families across a range of scenarios. In qualitative and quantitative research, we have discovered that providers also utilize content from the portal to educate their colleagues and trainees and to be a better resource to their patient families.