Tag Archive for: retinoblastoma research

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.

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.

Workshop attendees gather for a group photo.

Shaping Retinoblastoma Research Development Through Patient Engagement

Parents and survivors have valuable lived experience that can shape retinoblastoma research to improve health outcomes. Kaitlyn Flegg reviews progress of the innovative Canadian Retinoblastoma Research Advisory Board, where parent and survivor priorities are setting the research agenda.

Quote and text in gold bevelled font below multi-coloured lights on a tree: “Happiness depends upon ourselves” – Aristotle.

12 Ways to be Happier in the New Year

New beginnings, hopes, dreams, possibilities, resolutions. January is an ideal time to explore how we can make our daily lives happier. Our volunteer CEO, Abby White, shares New Year greetings, tips for a happier 2018, and a personal message of change as the New Year begins.

Happy Holidays - red silhouette of Santa on sleigh pulled by reindeer, flying past the moon. Set on gold background – reflecting colours of the WE C Hope logo.

Season’s Greetings from WE C Hope

Season’s Greetings. Bright lights adorn trees, festive music cheers the soul, and gifts the world over bring joy to those we love. This is a special time for celebration and reflection, for coming together as a community, and sharing hope. Especially when a child has cancer…

Through Our Eyes at One Retinoblastoma World 2017

Parents and survivors shared their thoughts on the “Through Our Eyes” wall at the One Rb World meeting in Washington D.C., 9-11 October 2017. These powerful insights were gathered anonymously via this website during September 2017, and highlight wide-ranging concerns.

Group photo outside the Jefferson Memorial.

Reflecting on One Retinoblastoma World 2017

Focused on best care for all, One Rb World 2017 included the first ever US national Family & Survivor Day. The collaborative program covered awareness, treatment, parent advocacy, life-long care, research, child life and the pathway to progress for our global community.

One Rb World group photo

One Retinoblastoma World 2017, Washington D.C.

Focused on best care for all, One Rb World 2017 included the first ever US national Family & Survivor Day. The collaborative program covered awareness, treatment, parent advocacy, life-long care, research, child life and the pathway to progress for our global community.

Dublin Convention Centre was lit up gold every night during the SIOP World Congress, celebrating the childhood cancer gold ribbon.

Alfred Knudson Memorial Session

A special session at the 2016 World Congress of Paediatric Oncology was hosted in memoriam of Alfred G. Knudson, Jr., MD, PhD, who died in July. Knudson developed his “two-hit hypothesis” after years of observing children with retinoblastoma, and this now forms the backbone of cancer genetics. The session focused on most effective staging for retinoblastoma, identifying and treating high risk children.

SIOP Welcome Signs

SIOP World Congress 2016

The International Society of Paediatric Oncology World Congress promotes a holistic approach to care. Through a unique collaboration of multiple diverse organizations, the program embraces almost every element of childhood cancer care and survivorship. Dublin hosted an inspired SIOP 2016 congress, October 19-22, a global village with a united voice and energy for all children and their families.