Familial retinoblastoma affects more than one member of the same family. Diagnosing children early provides the best opportunities for life and sight-saving care. Alison Skalet, ocular oncologist and director of the Rb service at Casey Eye Institute, Oregon Health & Science University, explores opportunities for early diagnosis when a parent, sibling or other relative has already been diagnosed.
Just 3 paediatric oncologists serve Ghana’s population of 29 million, but this dedicated team leads one of the best childhood cancer programs in West Africa. Dr. Vera Essuman (paediatric ophthalmologist) and Prof. Lorna Renner (paediatric oncologist) discuss retinoblastoma in Ghana and the development of care for children with eye cancer across the country.
The WE C Hope blog has been busy in 2018. We’ve shared 24 posts from 17 authors – parents, survivors, researchers or professionals providing retinoblastoma-related care. Each has brought valuable experience, knowledge and perspective, and we are very thankful to them all. Here is a recap of posts we’ve shared in the past 12 months.
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.
Intra-arterial chemotherapy (IAC) offers potential to save eyes and sight in children with retinoblastoma, when life is not at risk. Through the FAQ of this treatment, Sameh Soliman, MD reviews its goals, indications for use, benefits, risks and limitations, and offers resources for further reading.
July 11, World Population Day, focuses attention on the urgency and importance of population issues. Helen Dimaras Ph.D considers the effect of our expanding global population on the expected numbers of children who will develop eye cancer each year, and the provision of effective care to meet their needs.
Brenda Gallie, global leader in retinoblastoma clinical care, research and innovation, discusses an exciting technology promising to improve care during treatment and beyond. DePICTRB supports collaboration among the child’s entire circle of care, gives parents open access to their child’s record, and empowers clinical research.
The Canadian Retinoblastoma Research Advisory Board is working with patient families to guide future research priorities. Engaging parents and survivors can lead to improved health outcomes. Read on and sign up today.
Abby White, WE C Hope co-founder and volunteer CEO, shares her experience of living with the consequences of bilateral retinoblastoma, and her very personal journey to the organization’s birth.
Monday August 3, 2015 | Abby White, WE C Hope CEO
We have some exciting news to share with you, and we hope you will be excited too!
On 1st September, Daisy’s Eye Cancer Fund will be rebranding. We’ll have a new name, bright bold logo and a new home on the internet.
Why Are We Rebranding?
In 2012, our international team began discussing the possible need to rebrand. There were a number of reasons for this.
- Our logo, while beautifully bright and distinctive, was irrelevant to most children in the world because most children do not have blue eyes.
- Our logo also did not reflect the significance of red eye reflex and “white pupil” as the most common early sign of eye cancer in children.
- “Daisy”, the name, suggested a focus on one child called Daisy, creating confusion, especially when we began working in the USA where there are many funds named for individual children and fundraising for their important individual needs.
- The apostrophe (Daisy’s) caused confusion in communicating the name and coding for social media and search engine optimization.
- “Fund” implies we have significant resources from which to give grants to individuals. We receive many requests for funding of treatment, particularly from families in the developing world and USA. Unfortunately, we are unable to support individual families financially as we must focus our small funds on programs that will bring change to benefit many children, survivors and their families.
So after many long discussions, we took the momentous decision to rebrand. This has been a long journey with a lot of work, not least because there are four countries involved in the process! The experience has been a testament to the collaboration and co-operation between our teams in Canada, Kenya, the UK and USA.
We are finally ready to share our momentous news with our friends and supporters.
Daisy’s Gift Set Us on an Incredible Journey
We have so much to thank Daisy for. She has experienced so much in her young life, and given so much of herself to others. In 2004, not long after cancer claimed her second eye, her family gave the most generous gift to a child they’d never met who lived at the other end of the world. They donated money from the fund they’d set up for Daisy, to help save the life of two-year-old Rati from Botswana.
That beautiful gesture led to the birth of Daisy’s Eye Cancer Fund, initially fundraising just for Rati’s care, but rapidly growing to help many more children. Expert care sadly came too late for Rati, and there were so many opportunities to save her life in Africa that were missed. Daisy’s Eye Cancer Fund began to focus on addressing these challenges that cause so many children to suffer before they reach specialist care.
We have grown up so much in the last 10 years, always led by the children. We have a world focus and so much hope of better care for all those affected by retinoblastoma in both developing and developed countries. While the decision has been hard to make the change, the time is right. We know it will bring many blessings to those we help. Daisy and Rati will always, always be cherished at the heart of who we are and what we do.
The Big Change
From 1st September, our organization will be called World Eye Cancer Hope, WE C Hope for short. Our vision (life and sight for every child) remains unchanged. Our mission will also continue as always – educating for early diagnosis, empowering evidence based medical care for all and enabling effective family support for all.
Our new website will continue to provide a comprehensive Retinoblastoma Resource for families, survivors and all who care for them or have an interest in childhood eye cancer.
Our social media presences should continue as normal without any disruption to our friends and followers. Once we’re changed over, you’ll probably notice much more interaction with our social media communities, and we look forward to that very much.
We have more exciting news to share with you, particularly from our friends in Kenya – wonderful progress not just for children with retinoblastoma, but for all children with cancer in the country…we’re looking forward very much to sharing that news with you, but thought we’d do one exciting news report at a time!!
We’ll introduce you to the World Eye Cancer Hope logo on September 1. It’s simple, bright and very clearly tells of red reflex and the white reflex early sign of retinoblastoma that can be seen in flash photos when red-eye reduction is not used (see left) and dim light. We look forward to sharing it with you and hearing what you think!
WE C Hope! Please join us on September 1 as we begin a new chapter in the story of building effective care for all children with eye cancer, survivors and families.
WE C Hope
WE C Hope for today.
Small gestures of love to carry us through.
Space to breathe deep and our spirits renew.
Your comfort and peace and happiness too.
WE C Hope for tomorrow.
To hear the words “stable” or “cancer free”
No more treatments – just letting you Be.
Cherishing each day as a family.
WE C Hope for the future.
Systematic education so all are aware.
Global teamwork to improve medical care.
Families united against this cancer so rare.
WE C Hope for all families.
No more innocent faces defiled.
Action that reaches around the world.
Promising life and sight for every child.