Retinoblastoma
Canada
Special fund at the University Health Network
About WE C Hope
UK
Registered Charity #: 111-11-33
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USA
501(c)(3) National Non Profit - EIN: 45-4886827
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Kenya Partner
Kenya Childhood Cancer Trust
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, Abby White, WE C Hope CEO, 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.
Challenging the Global Retinoblastoma Burden on World Population Day
/in Awareness, Canada, Hope, Medical Care, One Rb World, Rati’s Challenge, Research, Resources, Retinoblastoma, WE C Hope /by AbbyJuly 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.
How to Support Sensory Development and Engagement In Babies and Young Children
/in Child Life, Hope, Living With Rb, Resources, Retinoblastoma, Support, Survivorship, WE C Hope /by AbbyBabies and young children rely on all their senses for learning and development, communication, comfort and coping. Jocelyn Leworthy, RECE, CIMI explores the role our senses play in daily life and development from our earliest days, and how we can encourage fun sensory stimulation to nourish young lives.
7 Ways Caregivers Can Support Infant Mental Health during Cancer Care.
/in Child Life, Hope, Living With Rb, Medical Care, One Rb World, Research, Resources, Retinoblastoma, Support, Survivorship, WE C Hope /by AbbyInfants experience a wide range of emotions, the depths of which are just beginning to be understood. Morgan Livingstone CCLS discusses how the external environment influences infant mental health, and the varied ways parents and medical professionals can help babies cope and thrive through medical interventions.
Sleep, Photosensitivity and Retinoblastoma
/0 Comments/in Hope, Living With Rb, Medical Care, Research, Resources, Retinoblastoma, Support, Survivorship, WE C Hope /by AbbyThe body’s sensitive biological clock regulates sleep, which is vital to our physical and mental health. Dr. Iona Alexander explores how some effects of retinoblastoma treatment may disrupt this highly tuned system, and invites survivors to help researchers understand the relationship between these effects and sleep.
Life as a Registered Mom
/0 Comments/in Awareness, Hope, Living With Rb, Medical Care, Our Stories, Retinoblastoma, Survivorship, USA, WE C Hope /by AbbyOn Saturday 12 May, International Nurses Day celebrates the incredible life-saving, life-changing work of nurses around the world. Janine Patterson shares the uncommon experience, benefit and burden of being a nurse when your child is diagnosed with cancer, and important things she has learned along the way.
How DNA and Genetic Knowledge Changes Lives: the impact of genetic testing for five families affected by retinoblastoma
/0 Comments/in Awareness, Genetics, Hope, Living With Rb, Medical Care, Our Stories, Research, Resources, Retinoblastoma, Survivorship, WE C Hope /by AbbyRetinoblastoma survivor and WE C Hope co-founder / CEO, Abby White, considers the central importance of DNA and genetic knowledge in caring for the child and family. She introduces us to Alice, Jamie, Megan, Rachel, Peter and their families, to find out how genetic testing can influence treatment, screening and lifelong care.
Make Space for Grief: Honour the place you are in
/0 Comments/in Awareness, Hope, Living With Rb, Medical Care, Our Stories, Retinoblastoma, Support, Survivorship, WE C Hope /by AbbyLinda Conyard MGestT explores the grief that can arise from retinoblastoma diagnosis, treatment, eye removal surgery, loss of innocence, and mutilated family life. She considers the potential harm of suppressing this grief, and offers both families/survivors and medical professionals ways to prevent prolonged suffering.