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.
The gold ribbon is the unifying symbol of childhood cancer. Worldwide, it celebrates the victory of each life saved, honours the memory of every precious child lost, and shines with hope of cure for all children. WE C Hope CEO, Abby White, explains four key reasons we support the gold ribbon campaign, and shares new gold ribbon merch designs you can buy to support our retinoblastoma 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.
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.
One Retinoblastoma World is community, conversation and collaboration for the best lifelong Rb care and support. Previous participants share why the event is so valuable. Rb survivor and WE C Hope CEO, Abby White, considers the many benefits of participating in person compared to attending online, and some ways we can travel “kuleana” to the conference.
Despite advances in retinoblastoma treatment, effective care is challenged globally by delayed diagnosis. Early diagnosis saves lives and improves sight-saving options. Rb survivor and WE C Hope CEO, Abby White, explores common reasons for delayed diagnosis, four pillars needed to achieve routine early diagnosis, and how our One Rb World community is united in this goal.
Worldwide, many children with eye cancer are diagnosed late. Early diagnosis saves lives, and offers the best opportunity for safe vision saving therapy. Leukocoria awareness advocate, Megan Webber, explores why glow awareness and community eye screening are vital to early detection and referral, and how Know The Glow and WE C Hope are helping to ensure children receive timely, effective care.
Understanding how retinoblastoma affects children is critical to improve diagnosis, treatment, support and outcomes for all. Mattan Arazi, M.D and Ido Didi Fabian, M.D., MPH, world-focused ophthalmologists from Sheba Medical Centre, Israel, explore why global data and collaboration are so important in Rb research, and the knowledge, progress, and hope they are building for families and professional teams worldwide.
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.
The human mind can subtly influence scientific research, with potentially serious consequences for patient care and outcomes. Rb survivor and WE C Hope CEO, Abby White, explores the nuanced world of cognitive and unconscious biases in retinoblastoma research, and strategies that can minimize their impact to ensure objective research and the best care possible for all.
