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

Retinoblastoma in D.C. 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.

A photo montage of three children with white pupil glow and turned eye early signs of retinoblastoma.

Retinoblastoma Awareness, Screening and Early Detection at One Rb World

Retinoblastoma awareness is the vital first step to cure! Early diagnosis leads to better outcomes for children, with less intense treatment. Sessions at every One Rb World explore how we can best raise parent, public and medical community awareness of common first signs, and develop effective screening for early detection. Below, we share sessions from the 2017,2020, and 2021 meetings.

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.

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.

Two young girls stand together on a large tree stump in a wooded park.

Laughter, Life Lessons and Love Take Root at the Texas Rb Family Weekend

In-person contact with other families and survivors affected by childhood eye cancer is life-changing. On 2-4 December, the Lone Star State shone bright as World Eye Cancer Hope USA welcomed survivors, patients and families from across the state. Marissa D. Gonzalez, bilateral Rb survivor, and President and founding board member of WE C Hope USA, shares highlights from the festive weekend.

A family gathers around a picnic table for this photo. Some are sitting, some standing, all smiling. Several people are wearing childhood cancer awareness gold ribbons and t-shirts. One girl’s t-shirt reads “I am a fighter; childhood cancer awareness”. The stick part of the letter H in “fighter” is replaced by a gold ribbon. ¬¬¬¬¬¬Across the table, a young child’s t-shirt bears another gold ribbon, and the words “for my sister”. A woman stands behind wearing a t-shirt with a big gold ribbon printed over a repeated series of words in various fonts – the words include “fighter, warrior, brave, believe, courage, hope, love”.

Sun and Smiles Shine at the 5th Annual Southern California Retinoblastoma Family Day

In-person contact with other families and survivors affected by childhood eye cancer is life-changing. On November 5th, World Eye Cancer Hope USA hosted 80 retinoblastoma community members for a picnic party in glorious fall sunshine.  Marissa D. Gonzalez, bilateral Rb survivor, and President and founding board member of WE C Hope USA, shares highlights from the day of sunshine and smiles.

A faded portrait of a toddler Marissa and her grandmother, sitting together on outdoor steps.

Living With Vision Loss: Challenges and Changing Perspectives

For many survivors of bilateral retinoblastoma, vision changes throughout life. This may be due to treatment late effects, eye health, or other medical events. World Eye Cancer Hope USA President and founding board member, Marissa D. Gonzalez, recounts her journey with vision loss during two different seasons of life, and her difficult course with acquired blindness as an adult after decades of good sight.

Image: A group of people gathered under a tree are smiling at the camera. On the left, Melinda wears a blue top. In the middle, Marissa wears a One Retinoblastoma World t-shirt and holds a white cane. To the right of the frame, Clayonia holds Camilla and waves at the camera. Max stands in front of them, holding his white cane. Behind them, a bright blue sky sweeps over rich foliage and red-roofed buildings.

Midwest Retinoblastoma Family Weekend: Friendships Formed in the Windy City

This summer, patients, survivors and families gathered for the first-ever Midwest Retinoblastoma Family Weekend, just outside Chicago. WE C Hope USA President and Rb survivor, Marissa Gonzalez, reflects on the friendship, support, hope, and fun shared, and the importance of coming together in person as a community. She also gives an update on more events coming soon to other regions across the USA.

Marissa and her mother are smiling at the camera. Marissa is wearing a black and gold number 6 USC football jersey. Her mom is wearing a cardinal USC shirt. Behind them stands the statue of Tommy Trojan on the USC campus.

A Milestone Anniversary: Celebrating 30 Years Being Cancer Free

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.

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Remembering Dr. A Linn Murphree

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.