Research funding is vital to improve retinoblastoma early diagnosis, life and sight-saving treatment, family support, survivor care, and cancer prevention. But securing the funds for rare cancer research is very tough, often demoralising for researchers and clinician-scientists. Three retinoblastoma researchers share their experience, and two organizations helping to drive Rb research forward invite you to help.
https://wechope.org/wp-content/uploads/2023/11/X-eXpensive.jpg7751090Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-11-20 08:00:242023-11-20 18:17:57Investing in Hope: The Quest to Fund Retinoblastoma Research
Understanding how retinoblastoma affects children is critical to improve diagnosis, treatment, support and outcomes for all. Mattan Arazi, M.D and Ido Didi Fabian, M.D., MPH, world-focused ophthalmologists from Sheba Medical Centre, Israel, explore why global data and collaboration are so important in Rb research, and the knowledge, progress, and hope they are building for families and professional teams worldwide.
https://wechope.org/wp-content/uploads/2023/10/ISOO-Africa-2023-edited-scaled.jpg17092560Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-11-06 08:00:072023-11-02 21:04:48United Against Retinoblastoma: The Importance of Global Data and Collaboration
Vision loss is a major part of the retinoblastoma experience, but rarely discussed in depth within our community. Sassy Outwater-Wright explores the trauma of vision loss, the experience of living with reduced or no sight, and pathways to living well at every age and stage of sight-loss.
https://wechope.org/wp-content/uploads/2018/10/SWNS_SCHOOL_STICK_01.jpg22913200Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-10-23 09:00:102023-10-23 10:38:29Destigmatizing Vision Loss Within the Retinoblastoma Community
The human mind can subtly influence scientific research, with potentially serious consequences for patient care and outcomes. Rb survivor and WE C Hope CEO, Abby White, explores the nuanced world of cognitive and unconscious biases in retinoblastoma research, and strategies that can minimize their impact to ensure objective research and the best care possible for all.
https://wechope.org/wp-content/uploads/2023/08/Medical-Caduceus-Symbol-as-Scales.jpg17342500Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-10-09 09:00:082023-11-16 14:04:39Unveiling Shadows: Cognitive and Unconscious Bias in Retinoblastoma Research
Prompt, appropriate medical care is vital for all children with retinoblastoma. A range of treatments are used depending on extent of the cancer, its risk of spread, and the child’s health and wellbeing. Sessions at every One Rb World explore aspects of medical care, and how we can ensure the best possible outcomes for each child. Below, we share sessions from the 2017, 2020, and 2021 meetings.
https://wechope.org/wp-content/uploads/2020/02/Mask-Play1.jpg21862007Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-09-25 09:00:072023-09-25 11:21:52Retinoblastoma Treatment 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.
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 09:45:002023-11-09 21:42:26Beyond 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
Investing in Hope: The Quest to Fund Retinoblastoma Research
Research funding is vital to improve retinoblastoma early diagnosis, life and sight-saving treatment, family support, survivor care, and cancer prevention. But securing the funds for rare cancer research is very tough, often demoralising for researchers and clinician-scientists. Three retinoblastoma researchers share their experience, and two organizations helping to drive Rb research forward invite you to help.
United Against Retinoblastoma: The Importance of Global Data and Collaboration
Understanding how retinoblastoma affects children is critical to improve diagnosis, treatment, support and outcomes for all. Mattan Arazi, M.D and Ido Didi Fabian, M.D., MPH, world-focused ophthalmologists from Sheba Medical Centre, Israel, explore why global data and collaboration are so important in Rb research, and the knowledge, progress, and hope they are building for families and professional teams worldwide.
Destigmatizing Vision Loss Within the Retinoblastoma Community
Vision loss is a major part of the retinoblastoma experience, but rarely discussed in depth within our community. Sassy Outwater-Wright explores the trauma of vision loss, the experience of living with reduced or no sight, and pathways to living well at every age and stage of sight-loss.
Unveiling Shadows: Cognitive and Unconscious Bias in Retinoblastoma Research
The human mind can subtly influence scientific research, with potentially serious consequences for patient care and outcomes. Rb survivor and WE C Hope CEO, Abby White, explores the nuanced world of cognitive and unconscious biases in retinoblastoma research, and strategies that can minimize their impact to ensure objective research and the best care possible for all.
Retinoblastoma Treatment at One Rb World
Prompt, appropriate medical care is vital for all children with retinoblastoma. A range of treatments are used depending on extent of the cancer, its risk of spread, and the child’s health and wellbeing. Sessions at every One Rb World explore aspects of medical care, and how we can ensure the best possible outcomes for each child. Below, we share sessions from the 2017, 2020, and 2021 meetings.
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.