Sharing knowledge and experience, and working together, are vital to build better retinoblastoma care. WE C Hope CEO, Abby White, highlights two key meetings on the horizon that will unite professionals, scientists, and parents and survivors who live with the impacts of childhood eye cancer, to advance care for all.
Many families tell of delayed pathways to care when their child is diagnosed with eye cancer. Orthoptist and retinoblastoma care coordinator, Sandra Staffieri, and leukocoria awareness advocate, Megan Webber, are frustrated by the repeated stories and their negative patient impacts. They explore why these delays continue, some efforts to overcome the challenges, and where they find hope for the future.
Survivor 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.
Retinoblastoma awareness is the vital first step to cure! Early diagnosis leads to less intense treatment and better outcomes for children and their families. Sessions at every One Rb World explore how we can best raise parent, public and medical community awareness of common first signs, and develop effective screening for early detection. Abby White gathers together sessions from the 2017, 2020, and 2021 meetings.
Every child with retinoblastoma, parent, sibling, survivor, and medical professional has a story to tell of their journey through childhood eye cancer. Understanding our individual and collective experience empowers us to develop and deliver holistic care for all. Rb survivor and WE C Hope USA Director, Clayonia Colbert-Dorsey discusses the growing field of ethnography research, and how it can positively impact our diverse global community.
Retinoblastoma 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 research is vital to understand how this cancer behaves; treatment benefits, side effects, and risks; and impacts throughout life. Findings help guide medical and supportive care for the child patient, survivor, and family. Rb Survivor, Abby White explores different types of medical research; their goals, benefits, and limitations; and opportunities to overcome the current challenges.
Gratitude may be one of the best ways we can support our health and wellbeing. But it’s much more than giving thanks. It isn’t easy when we’re living with cancer and its effects, and used in the wrong way, it can do much harm. In the first of two posts, Rb survivor Abby White explores what gratitude is, what it is not, the benefits, and how we can practice gratitude – even in tough times.
Gratitude is potent self-care. In part 2 of our Gratitude deep-dive, Rb survivor Abby White explores “the gratitude gap” – a big challenge that’s easy to overcome when we know about it. Plus how this knowledge can help children develop gratitude skills early. And 10 varied ways to practice and strengthen gratitude year-round, during the Holidays, and even in hard times.
Retinoblastoma care is a complex balancing act. Some children receive too little treatment, while others receive more than necessary, with potentially devastating results. Sharing two children’s stories, Rb survivor Abby White explores what under- and over-treatment are, when they may happen, their consequences, and how we can prevent them.
