Tag Archive for: retinoblastoma

Marissa wears a pistachio green sundress and smiles broadly. The background is a beach scene with blue ocean under a clear sky and people sitting in chairs under deep blue parasols.NYT Pic

Beyond Retinoblastoma: Celebrating Cancer Survivorship; Advocating Lifelong Care

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.

Close-up of a toddler with blue eyes, one of which has a creamy glow in the pupil. The child’s mouth is slightly open, with a curious or surprised expression. The child wears a pastel lilac jacket. The background is blurred and indistinct, putting the focus on the child's face. Overlaying the background, bold white text states "PREVENT CHILDHOOD BLINDNESS." Below is a thin yellow horizontal line.

Illuminating a Child’s Health: The Power of Glow Awareness and Innovation in Detecting Retinoblastoma

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.

Four ladies in party dress stand in front of a royal blue backdrop with a sign in bright turquoise blue and magenta that says Hope Without Boundaries.

Beyond Borders: Retinoblastoma in Africa and the Pacific

We recap a highly successful first conference in Africa for the International Society of Ocular Oncology, and look forward to One Retinoblastoma World 2024 in Honolulu, Hawaii. With One Rb World meeting co-chairs Dr. Jesse L. Berry, Children’s Hospital Los Angeles, USA; Sandra E. Staffieri PhD, Royal Children’s Hospital Melbourne, Australia; and Marissa D. Gonzalez, World Eye Cancer Hope USA.

A wide view of a grassy park with inflatable skee ball, obstacle course, and bounce house alongside giant versions of Connect 4 and Jenga. Next to the games are tables and chairs under white tents and a red picnic shelter. Guests of all ages are mingling throughout.

Fun in the So Cal Sun: 6th Annual Southern California Retinoblastoma Family Day

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.

An illustration of a syringe holding medicine. The syringe casts a long shadow in the shape of a dollar symbol.

Investing in Hope: The Quest to Fund Retinoblastoma Research

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.

A group of people representing diverse ethnic backgrounds are sitting or standing around a table scattered with post-it notes. They are deep in conversation, and several are reaching out to move post-it notes into new positions on the table.

United Against Retinoblastoma: The Importance of Global Data and Collaboration

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.

Destigmatizing Vision Loss Within the Retinoblastoma Community

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 silhouette of a medical caduceus symbol features two snakes winding around a winged staff. A weighing dish hangs from each wing. The scales are in balance.

Unveiling Shadows: Cognitive and Unconscious Bias in Retinoblastoma Research

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.

a baby chews an anaesthetic mask

Retinoblastoma Treatment at One Rb World

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.

Dan Gombos presents on the challenges of obtaining effective care for the adult with distant history of Rb. The slide behind him is titled “When It’s Time For Change” and reads: Once cured – the team may change; Few transition to a survivorship clinic; Even less to a survivorship clinic with Rb experience; Some children are never told of their diagnosis; Children grow up, move, and may live very far from any Rb specialists.

Retinoblastoma Survivorship at One Rb World

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.