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.

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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.

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An ethnically diverse group of people sit together around a table, moving puzzle pieces. The photo is taken from above, and only the hands of the participants are visible.

Multicentre Research Collaboration: the Challenge and the Light

Multicentre research is complex.  Challenges can arise in the process of bringing its  many benefits to patients, families and professionals. In part 2/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores common challenges, with solutions for each, and how our childhood cancer community encourages healthy, successful collaborations.

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Drawing of a distressed looking woman in a blue shirt with one hand in front of her face and the other held up beside her head, fingers splayed. The background of cyan blue circles, swirls and clouds has a tangle of thin circles and stars surrounding her head, indicating that she is distressed or confused.

Beyond Stress: PTSD Symptoms, Resources, Strategies and More

Retinoblastoma is highly stressful for most patients and their families.  Too often, it is a traumatic life experience that has long term impacts on mental health.  Jules Verdugo, child life & pediatric psychosocial care student, looks at the difference between normal stress reactions and PTSD, symptoms, how to get help, resources, some strategies for managing symptoms, and post traumatic growth.

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10 different people’s arms reach inwards to clasp hands at the centre. They represent different races, and their sleeves are brightly coloured.

Multicentre Research Collaborations for Retinoblastoma

Retinoblastoma is a rare cancer, posing major challenges to researchers everywhere. In part 1/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores the many ways multicentre research collaboration can overcome these challenges and change patient care and outcomes – for the child, survivor, family and professional.

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An African doctor looks on as another uses a handheld digital camera to visualise a child's eyes during an exam under anaesthesia.

Global Eyes: Connect, Communicate and Collaborate for Cure

Sharing knowledge and experience, and working together, are vital to build better retinoblastoma care. WE C Hope CEO, Abby White, highlights two key meetings on the horizon that will unite professionals, scientists, and parents and survivors who live with the impacts of childhood eye cancer, to advance care for all.

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All the guests smile during a group photo at the Kennedy Center. They are standing beneath a giant photograph of John F. Kennedy.

Retinoblastoma in D.C. Part 2: A Capital Weekend of Memory-Making and Community Building.

The fun continued throughout the Mid-Atlantic Retinoblastoma Family Weekend in early March 2023. In the second half of our weekend recap, our families take on rock climbing, explore the Kennedy Center, and continue to form vital friendships. Bilateral Rb survivor, WE C Hope USA President and Founding Board Member, Marissa D. Gonzalez, shares more highlights from this eventful and emotional weekend.

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Families smile while standing in front of the White House gates, bundled up in warm clothes.

Retinoblastoma in D.C. Partt 1: A Capital Weekend of Friendship, Community and Fun

Over the weekend of March 10 – 12, 2023, 80 retinoblastoma patients, survivors and families from across the US East Coast enjoyed monuments and landmarks around Washington D.C. while making new friends in the retinoblastoma community. Bilateral Rb survivor and WE C Hope USA President and Founding Board Member, Marissa D. Gonzalez, recaps this eventful and emotional weekend in this two-part blog.

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Two men and a woman sit at a table with computers, smartphones and papers. One man is talking into a handheld mic while the others listen.

You Can Help Change Retinoblastoma Care: Volunteer with WE C Hope

Events that unite our retinoblastoma community are vital for mutual support and collaboration to advance care for children, adult survivors, and families.  They all happen thanks to dedicated volunteers.  In the second of this 2-part post, we explore the many ways volunteers support our work, benefits to both the individual volunteer and community, and how you can help.

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Lisa, Marissa, and Kristen smile at the camera. They all wear matching One Retinoblastoma World T-shirts.

Volunteers Change Retinoblastoma Care: Family Days and One Rb World

Retinoblastoma is a rare childhood cancer with unique family and lifelong impacts. Events that bring our community together are vital for mutual support and collaboration to advance care. They happen thanks to dedicated volunteers. In part 1 of this 2-part post, we focus on Family Days and the One Rb World conference, planned and hosted entirely by volunteers.

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