A large, diverse group of men, women and children pose in front of the White House in Washington, D.C. under a bright but cloudy sky. They are dressed for cold weather in warm, casual clothes. Leafless trees and well-maintained lawns surround the White House.

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.

A long roads winds through rough country of valleys and hills.

Retinoblastoma Follow Up Care: the Long and Winding Road

Retinoblastoma follow up care is vital for all children after treatment, and for many survivors throughout life. The end of cancer therapy brings both celebration and uncertainty. Knowing what to expect can help calm worries and empower strong advocates. Child Life Specialist Morgan Livingstone reviews what follow up care may involve, and tips to help families and adult survivors navigate this stage of medical care.

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.

A diverse group of people sit around a table talking. The table is filled with papers and classes of water, and more people are seen working together around tables in the background..

Ethnography: A New Frontier in Retinoblastoma Research

Every child with retinoblastoma, parent, sibling, survivor, and medical professional has a story to tell of their journey through childhood eye cancer. Understanding our individual and collective experience empowers us to develop and deliver holistic care for all.  Rb survivor and WE C Hope USA Director, Clayonia Colbert-Dorsey discusses the growing field of ethnography research, and how it can positively impact our diverse global community.

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.

Retinoblastoma Research: Types, Challenges, Opportunities

Retinoblastoma research is vital to understand how this cancer behaves; treatment benefits, side effects, and risks; and impacts throughout life.  Findings help guide medical and supportive care for the child patient, survivor, and family.  Rb Survivor, Abby White explores different types of medical research; their goals, benefits, and limitations; and opportunities to overcome the current challenges.

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.

Close up image of a single red bauble hanging from the branch of fir tree. The bauble captures various light and shadows, including one point of bright white. The overall impression is similar to the white reflex captured within a red eye reflex in the early stages of retinoblastoma.

10 Ways to Celebrate the Holidays in Hospital

Being in hospital during the Holidays means children and parents cannot join the usual festivities. But you can bring festive spirit and familiar traditions into your hospital space to delight and sustain you all. While cancer has no regard for Christmas, Rb Survivor, Abby White shares 10 ways to support your emotional wellbeing, and your child’s, and welcome festive cheer during a yuletide inpatient admission.

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.