As the 6th One Retinoblastoma World Conference fast approaches, this year’s organizers Sandra Staffieri and Marissa Gonzalez, together with Megan Webber, are excited to share an update. They give an overview of the program, highlighting some of the sessions and goals, and the need for global discussion and collaboration involving all stakeholders.
This author has yet to write their bio.Meanwhile lets just say that we are proud Abby contributed a whooping 151 entries.
Entries by Abby
When children may inherit retinoblastoma, deciding how to start a family awakens new feelings in survivors. Every possible option comes with complex questions and emotional costs, and survivors and their partners may experience feelings of isolation as they navigate their decisions. Rb survivor Ruth Greenslade shares her reasons for deciding to have children, and her personal perspective of factors to consider when conceiving with heritable Rb.
How would you access the information in an image if you can’t see it? How would you enjoy it and feel part of the community talking about it? Making images accessible to blind and partially sighted people is vital. Bilateral Rb Survivor. Abby White, explains what alt-text is, how to provide inclusive image description, and why this matters in our retinoblastoma community.
Join World Eye Cancer Hope and local organizers from Australia for the sixth One Retinoblastoma World Conference, taking place virtually from October 1 – 3, 2021. Marissa Gonzalez, WE C Hope USA President, and this year’s Hosting Chair, introduces the conference and what’s in store for this unique collaborative program uniting professionals, families and survivors.
Nearly all children with retinoblastoma have some degree of sight loss arising from the cancer and its treatment. Identifying outdoor activities they can fully engage with may be hard for families. Bilateral Rb Survivor, Abby White, shares 20 classic and creative activities that include blind and visually impaired children and help connect them with the natural world.
Hot weather and changing holiday routines – summer can be unsettling for babies and young children. Add retinoblastoma to the mix, and achieving good sleep at this time of year can be very hard for affected children and siblings. Morgan Livingstone CCLS explains how infant massage can help, offering specific practical ways to improve sleep during sultry summer months, whether or not a child is receiving cancer care.
For individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story. Sharing personal experience and insight from fellow Rb survivors, Abby White explores key challenges encountered along the way, from working with doctors who do not understand the risk to psychological impacts, and the need for more effective care.
For individuals living with the retinoblastoma cancer syndrome, childhood eye cancer is only the start of the story. In the first of this two-part series, Rb survivor Abby White explores what the risk is and who it affects, the challenge of establishing personal risk, provision of lifelong follow up care, and early detection of second cancers. With contributions from fellow survivors.
We are quick to support family and friends in a crisis with words of comfort, encouragement, and affirmation, and practical acts to care for their wellbeing, so why are we so reluctant to give ourselves the same support? Abby White explores the difference between self-compassion, self-care, and self-love, how they are connected, why they matter so much, and how we can cultivate them.
Retinoblastoma Awareness Week promotes life and sight-saving early diagnosis. Sandra Staffieri, Rb Care Coordinator at the Royal Children’s Hospital Melbourne, highlights the importance of raising awareness among parents, caregivers, health professionals and survivors; and how lack of knowledge and delayed diagnosis can impact children, parents, and adults with second cancer risk.