Can the language we use impact patient well-being, conduct of research and care? WE C Hope CEO and retinoblastoma survivor, Abby White, explores the effect of scientists, doctors and reporters referring to retinoblastoma patients as “cases” rather than children, and how our One Rb World community helps create a foundation of care that nurtures complete well-being.
Happy Holidays from World Eye Cancer Hope! We love a white Christmas and the season’s festive glow – angels, fairy lights, iced cakes, candles, and snow… But we do not like a white glow in children’s eyes. Rb Survivor and WE C Hope CEO Abby White explains how festive Holiday photos could save a child’s life, and even their sight.
The final moments of the 7th One Rb World Conference in Honolulu, Hawaii, were dedicated to patients, families, and survivors, showcasing how empowering them can transform their individual experience and collective progress. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, tells of the inspiring child life programming, and groundbreaking patient engaged-research building bridges of hope and healing for our retinoblastoma community worldwide.
As the 7th One Rb World Conference in Honolulu, Hawaii, reached its final hours, personal insights and global initiatives took center stage. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, reflects on the collective mission to save lives, including The New York Times Opinion feature, “It Takes a Lifetime to Survive Childhood Cancer,” – and the story behind the article.
The shores of Waikiki Beach welcomed 175 guests to the 7th One Rb World conference this month, and more online, as Honolulu played host to this incredible meeting of retinoblastoma patients, survivors, families and medical professionals. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, reflects on the social gathering and Day One of the program in the first installment of this three-part conference review.
Evalynn, Gabriel, Abby and John all developed strabismus (squint or turned eye), one of the most common signs of retinoblastoma. This can also occur in healthy eyes or affect multiple family members without eye cancer. Sandra Staffieri, Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, explains, and answers the key question – when should parents and doctors be concerned?
When Retinoblastoma Care Co-ordinator Sandra Staffieri left Australia in August 2012 for a conference in Italy and a tour of Rb centres in North America, she had no idea how radically the journey would change her life and care at the Royal Children’s Hospital, Melbourne. Yet as she departed, One Rb World, the key destination on her trip, was not even on her itinerary. 12 years later, the impact of that trip continues…
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.
