Retinoblastoma is a complex cancer with potentially significant and serious lifelong impacts for the survivor and all family members. Sessions at every One Rb World explore the risks and challenges survivors and families encounter beyond childhood eye cancer, and how we can improve comprehensive survivorship care throughout life. Below, we share sessions from the 2017, 2020, and 2021 meetings.
https://wechope.org/wp-content/uploads/2017/10/Survivorship-Panel_Dan-Gombos-1.jpg17292500Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-09-11 09:00:522023-09-11 11:24:44Retinoblastoma Survivorship at One Rb World
Retinoblastoma can have a profound impact on family relationships, during diagnosis and treatment, and throughout life. Linda Conyard MGestT delves into the factors affecting relationships, and the best ways to support families. She also explores attachment theory, and how it can help us understand family dynamics when a child has a risk for, or diagnosis of, childhood eye cancer.
https://wechope.org/wp-content/uploads/2022/11/Y-Heart-Lantern-casts-heart-glow-on-wall-1.png18503073Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-08-28 09:00:352023-08-28 09:57:15Bound by Love, Unbound by Cancer: Retinoblastoma through the Lens of Relationships
Multicentre research is complex. Challenges can arise in the process of bringing its many benefits to patients, families and professionals. In part 2/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores common challenges, with solutions for each, and how our childhood cancer community encourages healthy, successful collaborations.
https://wechope.org/wp-content/uploads/2019/02/Hands-Puzzle-Pieces.png13332000Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-08-14 09:00:012023-08-14 11:17:05Multicentre Research Collaboration: the Challenge and the Light
Retinoblastoma is highly stressful for most patients and their families. Too often, it is a traumatic life experience that has long term impacts on mental health. Jules Verdugo, child life & pediatric psychosocial care student, looks at the difference between normal stress reactions and PTSD, symptoms, how to get help, resources, some strategies for managing symptoms, and post traumatic growth.
https://wechope.org/wp-content/uploads/2023/07/PTSD-Emotions.jpg528936Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-07-31 09:45:002023-07-25 13:37:35Beyond Stress: PTSD Symptoms, Resources, Strategies and More
When eye cancer is diagnosed early, it may be possible to save a child’s eye or even sight. But tumours and treatments themselves affect vision. Sandra Staffieri, orthoptist and Rb Care Co-ordinator at the Royal Children’s Hospital, Melbourne, reviews how different retinoblastoma therapies can impact the eye, and how parents can support their child.
https://wechope.org/wp-content/uploads/2020/07/Eye-Parch-and-Glasses.jpg828957Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-07-10 10:00:032023-07-17 10:15:28Retinoblastoma Treatment and Vision – The Double-Edged Sword
Familial 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.
https://wechope.org/wp-content/uploads/2019/04/Dr.-Skalet-performs-a-screening-EUA1.jpg26672000Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-07-03 10:00:372023-07-03 21:55:08Familial Retinoblastoma Screening: When Eye Cancer Runs in the Family
Retinoblastoma is a rare cancer, posing major challenges to researchers everywhere. In part 1/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores the many ways multicentre research collaboration can overcome these challenges and change patient care and outcomes – for the child, survivor, family and professional.
https://wechope.org/wp-content/uploads/2023/06/Community-of-Hands-LifeBeyondRb-scaled.jpg20172560Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-06-19 10:03:382023-08-14 11:18:27Multicentre Research Collaborations for Retinoblastoma
Many 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.
https://wechope.org/wp-content/uploads/2019/05/Alone-on-a-Park-Bench-2.jpg427640Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-06-05 10:00:362023-06-05 10:05:35Retinoblastoma Survivors’ Perspectives on Long-Term Follow up Care
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.
https://wechope.org/wp-content/uploads/2019/06/Fanaka_EUA1_31Aug_1.jpg16791979Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-05-22 10:01:582023-06-20 00:24:10Global Eyes: Connect, Communicate and Collaborate for Cure
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.
https://wechope.org/wp-content/uploads/2023/05/KTG-extra-to-use.png526526Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-05-08 10:08:492023-05-08 12:05:30“Have We Spoken Before?” Same Retinoblastoma Diagnosis Story, Different Parents…
Retinoblastoma Survivorship at One Rb World
Retinoblastoma is a complex cancer with potentially significant and serious lifelong impacts for the survivor and all family members. Sessions at every One Rb World explore the risks and challenges survivors and families encounter beyond childhood eye cancer, and how we can improve comprehensive survivorship care throughout life. Below, we share sessions from the 2017, 2020, and 2021 meetings.
Bound by Love, Unbound by Cancer: Retinoblastoma through the Lens of Relationships
Retinoblastoma can have a profound impact on family relationships, during diagnosis and treatment, and throughout life. Linda Conyard MGestT delves into the factors affecting relationships, and the best ways to support families. She also explores attachment theory, and how it can help us understand family dynamics when a child has a risk for, or diagnosis of, childhood eye cancer.
Multicentre Research Collaboration: the Challenge and the Light
Multicentre research is complex. Challenges can arise in the process of bringing its many benefits to patients, families and professionals. In part 2/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores common challenges, with solutions for each, and how our childhood cancer community encourages healthy, successful collaborations.
Beyond Stress: PTSD Symptoms, Resources, Strategies and More
Retinoblastoma is highly stressful for most patients and their families. Too often, it is a traumatic life experience that has long term impacts on mental health. Jules Verdugo, child life & pediatric psychosocial care student, looks at the difference between normal stress reactions and PTSD, symptoms, how to get help, resources, some strategies for managing symptoms, and post traumatic growth.
Retinoblastoma Treatment and Vision – The Double-Edged Sword
When eye cancer is diagnosed early, it may be possible to save a child’s eye or even sight. But tumours and treatments themselves affect vision. Sandra Staffieri, orthoptist and Rb Care Co-ordinator at the Royal Children’s Hospital, Melbourne, reviews how different retinoblastoma therapies can impact the eye, and how parents can support their child.
Familial Retinoblastoma Screening: When Eye Cancer Runs in the Family
Familial 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.
Multicentre Research Collaborations for Retinoblastoma
Retinoblastoma is a rare cancer, posing major challenges to researchers everywhere. In part 1/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores the many ways multicentre research collaboration can overcome these challenges and change patient care and outcomes – for the child, survivor, family and professional.
Retinoblastoma Survivors’ Perspectives on Long-Term Follow up Care
Many 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.
Global Eyes: Connect, Communicate and Collaborate for Cure
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.
“Have We Spoken Before?” Same Retinoblastoma Diagnosis Story, Different Parents…
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.