Retinoblastoma
Canada
Special fund at the University Health Network
About WE C Hope
UK
Registered Charity #: 111-11-33
Our Programs
USA
501(c)(3) National Non Profit - EIN: 45-4886827
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Kenya Partner
Kenya Childhood Cancer Trust
How Do I Create A Family When I Have An RB1 Mutation?
/in Awareness, Genetics, Hope, Living With Rb, Medical Care, Our Stories, Research, Resources, Retinoblastoma, Support, Survivorship, UK, USA, WE C Hope /by AbbyIndividuals who carry an RB1 mutation have a 50% chance of passing the retinoblastoma cancer syndrome on to each child. Melissa Mills, bilateral retinoblastoma survivor and genetic counsellor, explores the psychological and physical impacts of this experience, and the different routes to creating a family when a prospective parent has an RB1 mutation..
A Day Well Spent – California Family Day
/in Awareness, Child Life, Fundraising, Hope, Living With Rb, Medical Care, One Rb World, Our Stories, Retinoblastoma, Support, Survivorship, USA, WE C Hope /by AbbyLocal in-person support specific to the needs of families and survivors affected by retinoblastoma is much needed but very rare. Lisa Hester, mother of a young Rb survivor, reflects on the second WE C Hope California Family Day, held in August 2019, the seeds of our mission to bring this support to all across America.
Reflections of Camp Sunshine by Rb Moms
/in Awareness, Child Life, Fundraising, Hope, Living With Rb, Medical Care, Our Stories, Retinoblastoma, Support, USA, WE C Hope /by AbbyA diagnosis of childhood eye cancer impacts families in so many ways, during the immediate crisis of treatment, and years after “cure”. Knowing you are not alone on the journey is the greatest comfort and strength. Five mothers reflect on the healing power of Camp Sunshine, a retreat that cares for the entire family when cancer strikes.
Mindfulness Tips for Retinoblastoma Families and Supporting Teachers
/in Art For Eyes, Child Life, Hope, Living With Rb, Medical Care, Research, Resources, Retinoblastoma, Support, Survivorship /by AbbyLiving with the daily effects of childhood eye cancer can be overwhelming, for all family members. Both the immediate crisis of diagnosis and treatment, and the long-term impacts and risks. Child Life Intern and Student Teacher, Meagan Fuller, highlights some simple mindfulness techniques parents and children can use to ease daily tension.
TNM Staging System for Retinoblastoma
/in Awareness, Genetics, Hope, Medical Care, One Rb World, Research, Retinoblastoma /by AbbyRetinoblastoma is staged to help doctors describe the extent of cancer in a child’s body, define potential for cure, vision and eye salvage, identify the best treatments, and compare impact of different therapies. Dr. Ashwin Mallipatna explains the TNM Staging System for Retinoblastoma and why it is the best approach for patient care.
Retinoblastoma Survivors’ Perspectives on Long-Term Follow up Care
/in Awareness, Child Life, Genetics, Hope, Living With Rb, Medical Care, One Rb World, Our Stories, Research, Retinoblastoma, Support, Survivorship, UK, USA, WE C Hope /by AbbyMany retinoblastoma survivors live with significant long term treatment impacts and second cancer risks. Yet most children, adult survivors and their families struggle to access appropriate ongoing care. Len Burns, a totally blind bilateral Rb survivor and licensed family therapist, highlights the most common survivor concerns, and potential ways to improve long term care and quality of life.
When ‘Something’ Looks the Same As ‘Nothing’: Strabismus, Leukocoria and Childhood Eye Cancer
/in Awareness, Hope, Living With Rb, Medical Care, One Rb World, Research, Retinoblastoma, Support, WE C Hope /by AbbyStrabismus (turned eye) and leukocoria (white pupil), the most common signs of retinoblastoma, can also occur in healthy eyes. Sandra Staffieri, Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, examines both and answers the key question – when should parents and doctors be concerned?
Celebrating Annie: Guide Dog Retires from WE C Hope Team
/in Awareness, Genetics, Hope, Kenya, Living With Rb, Medical Care, One Rb World, Our Stories, Rati’s Challenge, Retinoblastoma, Support, Survivorship, UK, WE C Hope /by AbbyAnnie, an important member of our team, retired on April 15th. Abby White, retinoblastoma survivor, WE C Hope founder and volunteer CEO, reflects on working with her guide dog for seven years. She considers the many varied gifts Annie has brought to both herself as an individual retinoblastoma survivor, and to WE C Hope.
Familial Retinoblastoma Screening: When Eye Cancer Runs in the Family
/in Awareness, Canada, Genetics, Hope, Living With Rb, Medical Care, Our Stories, Research, Resources, Retinoblastoma, Support, Survivorship, UK, USA, WE C Hope /by AbbyFamilial 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.
Retinoblastoma in Ghana: Saving Children’s Life and Sight
/in Awareness, Canada, Fundraising, Hope, Living With Rb, Medical Care, One Rb World, Rati’s Challenge, Retinoblastoma, Survivorship, UK, USA, WE C Hope /by AbbyJust 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.