Fifty retinoblastoma patients, survivors, and their family members joined World Eye Cancer Hope USA in February for three days of connection and fun in Colorado’s capital. Marissa D. Gonzalez, President and Founding Board Member or WE C Hope USA, shares highlights from the weekend, and why these gatherings are so important to our community.
At seventeen months old, Marissa Gonzalez was diagnosed with bilateral retinoblastoma – the first turning point in her lifelong journey with this cancer syndrome. Today, as President of WE C Hope USA, she celebrates 32 years free from eye cancer, and shares the latest chapter of her cancer survivorship story, with two appeals to all in our community.
Daisy’s Eye Cancer Fund (now World Eye Cancer Hope) evolved from the generosity of one family sharing hope with another at opposite ends of the earth, creating light within the darkness that retinoblastoma brought to their lives. Rb Survivor and Daisy Fund co-founder, Abby White, shares Rati’s story, and how her experience led to our hope-building work today.
Retinoblastoma is a rare cancer, affecting around 1 in 16,000 live births. Rarity poses challenges from pre-diagnosis through treatment and lifelong care – Rare Disease Day matters to our community! Discover how you can glow bright on the evening of February 29 to help form a Global Chain of Light for everyone living with rare childhood eye cancer and its effects.
Childhood eye cancer and its lifelong impacts can be a lonely, overwhelming experience. Connecting with others who understand is a healing balm for many. On November 4th, nearly 100 young patients, survivors, family and friends gathered to celebrate and support the amazing Rb community in Southern California. Marissa D. Gonzalez, bilateral Rb survivor and WE C Hope USA President, shares highlights from another delightful Family Day.
Research funding is vital to improve retinoblastoma early diagnosis, life and sight-saving treatment, family support, survivor care, and cancer prevention. But securing the funds for rare cancer research is very tough, often demoralising for researchers and clinician-scientists. Three retinoblastoma researchers share their experience, and two organizations helping to drive Rb research forward invite you to help.
Vision loss is a major part of the retinoblastoma experience, but rarely discussed in depth within our community. Sassy Outwater-Wright explores the trauma of vision loss, the experience of living with reduced or no sight, and pathways to living well at every age and stage of sight-loss.
Prompt, appropriate medical care is vital for all children with retinoblastoma. A range of treatments are used depending on extent of the cancer, its risk of spread, and the child’s health and wellbeing. Sessions at every One Rb World explore aspects of medical care, and how we can ensure the best possible outcomes for each child. Below, we share sessions from the 2017, 2020, and 2021 meetings.
Retinoblastoma is a complex cancer with potentially significant and serious lifelong impacts for the survivor and all family members. Sessions at every One Rb World explore the risks and challenges survivors and families encounter beyond childhood eye cancer, and how we can improve comprehensive survivorship care throughout life. Below, we share sessions from the 2017, 2020, and 2021 meetings.
Familial retinoblastoma affects more than one member of the same family. Diagnosing children early provides the best opportunities for life and sight-saving care. Alison Skalet, ocular oncologist and director of the Rb service at Casey Eye Institute, Oregon Health & Science University, explores opportunities for early diagnosis when a parent, sibling or other relative has already been diagnosed.
