For many children and their families, eye cancer diagnosis begins a lifetime journey, with many twists and turns through treatment and long after being declared cancer free. World Eye Cancer Hope USA President Marissa D. Gonzalez reflects on three decades being cancer free from retinoblastoma, the journey of a cancer survivor, and the future with her cancerversary fundraiser.
Tag Archive for: ophthalmology
With a heavy heart, we share the news that Dr. A Linn Murphree, Professor of Ophthalmology, Founder of the Vision Center, and Director of the Retinoblastoma Program at Children’s Hospital Los Angeles and USC, passed peacefully on March 9th, 2022. Linn was a tremendous force in ocular oncology, advancing knowledge of the RB1 gene, and care for children with retinoblastoma.
On 1-3 October, we hosted a hope-filled One Rb World 2021 meeting. Planning and hosting is always an adventure, and the 6th One Rb World was especially so! Co-Chairs, Dr. Sandra Staffieri PhD, Rb Care Co-Ordinator, Royal Children’s Hospital, Melbourne, Australia, and Marissa Gonzalez, Bilateral Rb Survivor and President, World Eye Cancer Hope USA, share behind-the-scenes insight and conference highlights.
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.
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.
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.
A retinoblastoma diagnosis is distressing for a family, its effects often lifelong. CHECT Support Workers help families and individuals in the UK, from diagnosis and throughout life. Support Service Manager, Lesley Geen, describes how CHECT Support Workers collaborate with the medical team to care for the whole family, and the different support services offered at each stage of life.
From the moment a child is diagnosed with retinoblastoma, even from when their parent first takes them to the doctor, life is a rollercoaster, a whirlwind of information, decisions, and grief. Sandra Staffieri describes her role as Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, how the role evolved, challenges faced, and the unexpected joys experienced despite it all.
When someone asks for support on social media, instincts drives us to offer hopeful solutions. But without full knowledge and understanding, we may cause more harm than help. Reviewing real interactions and their outcomes, WE C Hope CEO, Abby White, shares key points to consider when discussing retinoblastoma, and how to respond well.
How we respond to one another in retinoblastoma support forums, and the information we share, can significantly impact patient care and outcomes. Abby White shares 7 ways we can respond positively to any social media request for help, to improve communication, support, and best care for the child/survivor and family.