Strong parent instinct and intuition often lead to a child’s eye cancer diagnosis. Rb Survivor and WE C Hope CEO, Abby White explores what they are and how they differ, why they are so important for retinoblastoma early detection, why primary care providers should take them seriously, and how they impacted the diagnosis journey of four children.
Worldwide, children and their families grapple with life-threatening eye cancer due to delayed diagnosis and care. Unchecked, retinoblastoma has far-reaching consequences. Through two family stories, WE C Hope CEO Abby White explores the impacts of low awareness, slow referral, and delayed care, and the life-saving, sight-saving opportunities they reveal.
Critical clues to a child’s eye cancer hide in plain sight. Parent and physician knowledge, and ability to spot these silent signs are vital to early detection, swift referral, and prompt diagnosis. Meet five children from around the world whose parents’ curiosity, nagging concern, and action were pivotal to their diagnosis and life-saving, sight-saving care.
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.
