Retinoblastoma
Canada
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About WE C Hope
UK
Registered Charity #: 111-11-33
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501(c)(3) National Non Profit - EIN: 45-4886827
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Kenya Childhood Cancer Trust
Jayne Kamau, My friend and Colleague
/in Child Life, Fundraising, Hope, Kenya, Medical Care, One Rb World, Rati’s Challenge, Retinoblastoma, Support, Survivorship, WE C Hope /by AbbyOn March 10, 2019, our beloved child life specialist Jayne Kamau died aboard Ethiopian Airlines flight ET302 as she returned home from SIOPAfrica in Cairo. WE C Hope Child Life Director, Morgan Livingstone, reflects on more than a decade of mentoring, friendship and working together to advance child life in Kenya. Co-authored with WE C Hope CEO, Abby White.
10 Ways to Support Your Child Through EUA for Retinoblastoma
/in Child Life, Hope, Living With Rb, Medical Care, Resources, Retinoblastoma, Support, Survivorship, WE C Hope /by AbbyExaminations Under Anaesthetic (EUA) are an essential part of retinoblastoma diagnosis, treatment, and surveillance follow up care. Combining content from our Child Life Resource, Morgan Livingstone CCLS CIMI MA reviews 10 ways parents can support children of all ages through the experience to benefit everyone’s wellbeing.
4 Reasons Survivors and Families May Not Participate in Retinoblastoma Research, and Ways to Improve Engagement.
/in Awareness, Genetics, Hope, Living With Rb, Medical Care, One Rb World, Research, Retinoblastoma, Support, Survivorship, WE C Hope /by AbbySurvivor 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.
Talking About Your Child’s Cancer Diagnosis With Family and Friends
/in Awareness, Child Life, Hope, Living With Rb, Resources, Retinoblastoma, Support, Survivorship, WE C Hope /by AbbyTalking about a child’s cancer with family and friends can be deeply cathartic for parents one day, and utterly exhausting the next. Asking for and receiving help can be a minefield too. Morgan Livingstone CCLS explores why this is so, and offers tips and tools to reduce stress, improve coping and boost effective practical support.
Father Braille: A Wonderfully Dotty Relationship
/in Awareness, Child Life, Hope, Living With Rb, Our Stories, Resources, Retinoblastoma, Survivorship, UK /by AbbyFor many individuals diagnosed with retinoblastoma, sight-loss means braille is the primary means of reading and writing. In celebration of World Braille Day on Friday January 4th, Rb survivor Ffion Miles introduces us to a very special relationship she has with six tiny dots, and the marvellous adventures they’ve shared together.
Our 2018 Blog Year in Review
/in Awareness, Canada, Child Life, Genetics, Hope, Living With Rb, Medical Care, One Rb World, Our Stories, Research, Resources, Retinoblastoma, Support, Survivorship, UK, USA, WE C Hope /by AbbyThe 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.
10 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.
/in Awareness, Child Life, Genetics, Hope, Living With Rb, Medical Care, One Rb World, Resources, Retinoblastoma, Support, Survivorship, UK, WE C Hope /by AbbyDo you know the difference between a biopsy and pathology, or an RB1 gene deletion and Chromosome 13q deletion? Do you know how a retinoma becomes retinoblastoma or when remission becomes cure? In Part 2 of a mini-series, WE C Hope CEO Abby White explains these and other terms, and why using them correctly is important.
8 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.
/in Awareness, Child Life, Genetics, Hope, Living With Rb, Medical Care, One Rb World, Resources, Retinoblastoma, Support, Survivorship, UK, WE C Hope /by AbbyDo you know the difference between lazy eye and squint, or an ocular oncologist and a paediatric oncologist? Do you know when extraocular Rb becomes metastatic, or why trilateral Rb is neither of these? In Part 1 of a mini-series, WE C Hope CEO Abby White explains these and other terms, and why using them correctly is important.
Shaping Retinoblastoma Research Development Through Patient Engagement
/in Awareness, Canada, Living With Rb, Medical Care, Research, Retinoblastoma, Support, Survivorship, WE C Hope /by AbbyParents 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.
Destigmatizing Vision Loss Within the Retinoblastoma Community
/in Awareness, Living With Rb, Our Stories, Resources, Retinoblastoma, Support, Survivorship, USA /by AbbyVision loss is a major part of the retinoblastoma experience, but rarely discussed in depth within our community. Sassy Outwater-Wright explores the trauma of vision loss, the experience of living with reduced or no sight, and pathways to living well at every age and stage of sight-loss.