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.

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.

Text reads “Know the glow | prevent childhood blindness”. KnowTheGlow logo is in the bottom left corner. A latino girl sits in a grassy field. She is wearing denim dungarees and a white shirt, and has two bows in her curly hair. She is smiling ho at the camera and has a white glow in her left eye.

“Have We Spoken Before?” Same Retinoblastoma Diagnosis Story, Different Parents…

Many families tell of delayed pathways to care when their child is diagnosed with eye cancer. Orthoptist and retinoblastoma care coordinator, Sandra Staffieri, and leukocoria awareness advocate, Megan Webber, are frustrated by the repeated stories and their negative patient impacts. They explore why these delays continue, some efforts to overcome the challenges, and where they find hope for the future.

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.

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.

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 less intense treatment and better outcomes for children and their families. 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.  Abby White gathers together 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.

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.