Retinoblastoma
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Registered Charity #: 111-11-33
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501(c)(3) National Non Profit - EIN: 45-4886827
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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.
Intra-Arterial Chemotherapy (IAC) for Retinoblastoma Made Simple
/in Canada, Hope, Medical Care, One Rb World, Research, Retinoblastoma, USA /by AbbyIntra-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.
Always Life Before Eye – So Why Are Curable Children Dying?
/in Awareness, Hope, Living With Rb, Medical Care, One Rb World, Our Stories, Research, Retinoblastoma, Support, USA, WE C Hope /by AbbyProgress of eye-saving treatments for retinoblastoma is very exciting, but an increasing number of curable children are developing metastatic relapse and dying after eye-salvage therapy. With parent experiences woven throughout, Retinoblastoma survivor Abby White, asks why this is happening and what can be done to prevent it.
The Retinoblastoma Rollercoaster
/in Awareness, Hope, Living With Rb, Medical Care, Our Stories, Retinoblastoma, Support, WE C Hope /by AbbyThe rollercoaster ride is unexpected, wild and frightening when a child is diagnosed with retinoblastoma. The greatest comfort is knowing you are not alone on the journey. Lori Baños, creator and moderator of the Facebook group Rb Moms, reflects on the experience, with insightful contributions from group members.
Friendships Through Retinoblastoma
/in Awareness, Hope, Living With Rb, Our Stories, Retinoblastoma, Support, USA, WE C Hope /by AbbyA diagnosis of childhood cancer can leave parents feeling adrift and utterly alone. The friends who walk with them through their child’s medical care are often cherished lifelong, and from a central thread in their own healing. Megan Santos reflects on the many friendships formed before, during and after her daughter’s treatment for retinoblastoma.