2020 has been eventful and challenging for the whole world. Throughout, WE C Hope has continued to serve, unite and advance our global retinoblastoma community. WE C Hope USA President and retinoblastoma survivor, Marissa Gonzalez, reflects on the year’s highlights with thanks, and shares some plans for the coming year.
In October, a diverse community of survivors, families and medical professionals came together at One Retinoblastoma World for two days of inspiring panels, research and calls to action. WE C Hope USA President Marissa D. Gonzalez shares a recap of the fifth global conference, and her vision for next year’s event in Hawaii.
Most children with retinoblastoma experience some degree of vision loss that requires accommodations and support to reach their potential in school. Four vision professionals, who have experience of retinoblastoma, review the supports children may need, and what parents can do to help secure them.
Parents of children with retinoblastoma ask how often their child’s eyes should be examined under anaesthetic, and if schedules vary depending on type of eye salvage treatment. Abby White, in collaboration with a specialist from one leading US treatment center, helps to answer these important questions.
Our first virtual family event was a great success, with added sparkle from Kendra Scott jewelry. Please help us support more families by shopping at KendraScott.com on Sat 12 – Sun 13 September. They’ll donate to WE C Hope 20% of sales made using code GIVEBACK8400. Shine gold this September Childhood Cancer Month.
Despite advances in eye saving therapy for retinoblastoma, removing a child’s eye remains the most common treatment worldwide. Rb survivor and WE C Hope CEO, Abby White, shares her perspective of life after enucleation, and experiences from seven fellow survivors, offering hope to parents facing the reality of enucleation.
Diagnosis and treatment of eye cancer in early childhood is only the start of a lifelong story for many individuals affected by retinoblastoma. Marissa Gonzalez, Rb survivor and President of World Eye Cancer Hope USA, shares seven tips for being an active participant in your retinoblastoma survivorship journey.
Strabismus (turned eye) and leukocoria (white pupil) are the most common early signs of retinoblastoma. Sandra Staffieri, Rb Care Co-ordinator at the Royal Children’s Hospital, Melbourne, explores why parent and healthcare provider awareness of these signs is vital to early diagnosis of childhood eye cancer.
Eye cancer is a potentially overwhelming experience for young children, whether patient or sibling. Child life can radically improve care and life for the entire family, but too many children lack access to this specialist support. Abby White shares how WE C Hope supported Child Life programs are helping to change that.
Families and medical professionals worldwide seek retinoblastoma care at centres offering treatments that are unavailable in their home country. Many families contact WE C Hope for assistance before, during or after such treatment. Abby White explores the challenges they experience and what can be done to help improve outcomes for their children.