The real spirit of the Holiday Season is not to be found in a festive dinner or brightly wrapped presents under a tree, but in our dedication to helping those around us, in the sharing of hope, peace and friendship. Our CEO, Abby White, shares her mother’s memory of healing Christmas love when Abby was an infant being treated for eye cancer, and some helpful hints to support families in need this year.
A special session at the 2016 World Congress of Paediatric Oncology was hosted in memoriam of Alfred G. Knudson, Jr., MD, PhD, who died in July. Knudson developed his “two-hit hypothesis” after years of observing children with retinoblastoma, and this now forms the backbone of cancer genetics. The session focused on most effective staging for retinoblastoma, identifying and treating high risk children.
The International Society of Paediatric Oncology World Congress promotes a holistic approach to care. Through a unique collaboration of multiple diverse organizations, the program embraces almost every element of childhood cancer care and survivorship. Dublin hosted an inspired SIOP 2016 congress, October 19-22, a global village with a united voice and energy for all children and their families.
Dublin, Day 2 of One Retinoblastoma World 2016, a global meeting of highly committed retinoblastoma advocates. Focused on best care for everyone, we discussed common sense primary treatment and the pros and cons of eye salvage for child and eye, building effective care in developing countries, innovations for global care, and the pathway to progress for our global community.
The land of 100,000 welcomes warmly greeted our global childhood eye cancer community in October. Dublin enthusiastically hosted One Retinoblastoma World 2016, before the world congress of the International Society of Paediatric Oncology. A meeting of highly committed doctors, parents, survivors, researchers and advocates from six continents, focused on best care for everyone affected by retinoblastoma.
There’s a new RAE of Hope in the retinoblastoma world this September as we shine the light on childhood eye cancer. Thomas Reid is a survivor, father of a survivor and a Director of WE C Hope USA. The entire Reid Family dedicates Childhood Cancer Awareness Month to Raising Awareness and Empowerment as they help children, adult survivors and their families share their experience of retinoblastoma and how it has shaped their lives. Watch the RAE of Hope videos and be inspired.
The retinoblastoma world lost a dedicated physician and friend on Friday, July 22nd. Dr Barrett Haik was a highly skilled ophthalmic surgeon, researcher, educator, mentor and fundraiser who cared deeply for the children, adults and families he treated. He led development of the ophthalmic oncology service at St. Jude Children’s Research Hospital, and supported international outreach that has improved the lives of thousands of children with retinoblastoma across the USA and around the world.
British comedy writer and actress Caroline Aherne sadly died on Saturday, July 2nd, after suffering lung cancer linked to her retinoblastoma diagnosis as a child. Caroline is best known as creator of Mrs. Merton and the Royle Family TV shows. Her humour brought laughter to millions around the world, but she also used it to stay sane during her multiple cancer battles.
Today we celebrate Rati, the beautiful, bright, bubbly butterfly who came so briefly into our lives, changed us all so dramatically and inspired the foundation of WE C Hope. Ultimately, expert care came too late and we could not save her life. Rati had plans of her own though. She taught us to see and hear and understand the needs of families like her own, and she challenged us to do something to help change their experience of retinoblastoma.
On Rare Diseases Day, we explore 10 complex, controversial topics in Rb care. While we continue to avoid them, children, families and survivors suffer.