Tag Archive for: childhood cancer research

A table is covered with a large sheet of white paper featuring hand-drawn, decorative letters spelling out the words: One Retinoblastoma World 2024. The words are outlined in various colours and patterns, and the letters are intricately designed with stripes, flowers, polka dots, and googly eyes. On the table, a container holds colorful markers; sheets of stickers featuring tropical and fun designs, such as flowers, palm trees, animals, and beach items; large, playful googly eyes; hand-drawn outlines of children’s hands.

One Rb World 2024 Says “Mahalo” to the Retinoblastoma Community – Day Three | Page 4

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.

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Mark sits at a round table covered in a white tablecloth, He wears a black t-shirt and black glasses, and holds baby Lennox on his lap. Lennox wears a white t-shirt with green sleeves. A woman seated close by is smiling as she watches them together.

From Treatment to Triumph: Seeking Cure for All at One Rb World 2024 Day Three | Page 2

Day Three of the 7th One Rb World Conference in Honolulu, Hawaii, continued to inspire with an in-depth exploration of treatment pathways, survivor resilience, and global efforts to save lives. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, shares highlights from the vital discussions and profound personal stories shaping a hopeful future for all affected by retinoblastoma.

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10 adults smile together in front of a sign reading “Mahalo! One Retinoblastoma World”. Peggy and Michael are wearing black long-sleeve tops with dark wash jeans. Kirsten Ramos wears a blue shirt with light wash jeans. Jesse Berry wears a green dress with ruffles around the collar. Cat Paul and Joe Cox are wearing aqua-blue One Retinoblastoma World 2024 t-shirts featuring the conference logo and a design with palm trees, hibiscus, and waves. Victoria Danhakl wears a yellow and brown floral dress. And Roselle and Josh Castanon wear shirts with the slogan: I wear gold to support my daughter.

A Global Call to Action: Early Detection and Advocacy at One Rb World 2024 Day Three | Page 1

Day Three of the 7th One Rb World Conference in Honolulu, Hawaii, was a powerful culmination of global community, collaboration, and hope. From early detection in rural communities to life-saving care, from child life to patient-led research, and more. Marissa D. Gonzalez, Conference Event Chair, shares highlights from the inspiring presentations, life-changing progress, and extraordinary stories that closed this remarkable event.

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A woman sits alone on a bench under a sprawling weeping willow tree in a park. She is facing away from the camera.

Retinoblastoma Survivors’ Perspectives on Long-Term Follow up Care

Many retinoblastoma survivors live with significant long term treatment impacts and second cancer risks. Yet most children, adult survivors and their families struggle to access appropriate ongoing care. Len Burns, a totally blind bilateral Rb survivor and licensed family therapist, highlights the most common survivor concerns, and potential ways to improve long term care and quality of life.

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2 people side by side at a wooden table, one working on a laptop the other writing in a notebook. Only their hands are visible.

4 Reasons Survivors and Families May Not Participate in Retinoblastoma Research, and Ways to Improve Engagement.

Survivor participation in retinoblastoma research is key to understanding long-term impacts of the cancer, and improving care. But many barriers to participation exist Len Burns, a blind bilateral Rb survivor and licensed family therapist, considers four major barriers, and opportunities to overcome them.

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A male African doctor looks on as a female surgeon uses a handheld digital camera to examine a boy's eye during an exam under anaesthesia. Both doctors wear surgical scrubs, masks, gloves, and caps. A laptop computer sits open beside the female doctor, but the images projected from the camera onto its screen are not visible in the photo.

TNM Staging System for Retinoblastoma

Retinoblastoma is staged to help doctors describe the extent of cancer in a child’s body, define potential for cure, vision and eye salvage, identify the best treatments, and compare impact of different therapies. Dr. Ashwin Mallipatna explains the TNM Staging System for Retinoblastoma and why it is the best approach for patient care.

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