Tag Archive for: informed parent

The Informed Parent: 6 Tips for Staying Up to Date in a Social Media World

Google, AI, and social media play an increasingly significant role in the lives of families affected by retinoblastoma, but without careful use, they can complicate a child’s medical care and even put life at risk. Dr. Jesse Berry shares her recommendations for being a safely informed, engaged parent advocate in the modern hyper-connected age.

Tree of Life - thr trunk of the tree is a DNA double helix

How DNA and Genetic Knowledge Changes Lives: the impact of genetic testing for five families affected by retinoblastoma

Retinoblastoma genetics are complex.  Their implications for medical care can be confusing for families and professionals alike.  For World DNA Day, Rb survivor and WE C Hope co-founder / CEO, Abby White, considers the central importance of DNA and genetic knowledge in caring for the child and family, during treatment and throughout life.

“Grief is in two parts. The first is loss. The second is the remaking of life.” Anne Roiphe

Make Space for Grief: Honour the place you are in

Linda Conyard MGestT explores the grief that can arise from retinoblastoma diagnosis, treatment, eye removal surgery, loss of innocence, and mutilated family life. She considers the potential harm of suppressing this grief, and offers both families/survivors and medical professionals ways to prevent prolonged suffering.