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
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/Extra-3-KTG-poster.jpg6281200Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-05-08 10:08:492024-01-16 20:10:16“Have We Spoken Before?” Same Retinoblastoma Diagnosis Story, Different Parents…
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.
https://wechope.org/wp-content/uploads/2019/02/Photo-for-We-C-Hope-blog.jpeg10961655Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-04-24 10:00:122023-06-05 10:08:394 Reasons Survivors and Families May Not Participate in Retinoblastoma Research, and Ways to Improve Engagement.
The fun continued throughout the Mid-Atlantic Retinoblastoma Family Weekend in early March 2023. In the second half of our weekend recap, our families take on rock climbing, explore the Kennedy Center, and continue to form vital friendships. Bilateral Rb survivor, WE C Hope USA President and Founding Board Member, Marissa D. Gonzalez, shares more highlights from this eventful and emotional weekend.
https://wechope.org/wp-content/uploads/2023/04/Group-Photo-JFK-Center-scaled.jpeg19202560Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-04-10 09:49:422023-04-10 09:49:42Retinoblastoma in D.C. Part 2: A Capital Weekend of Memory-Making and Community Building.
Over the weekend of March 10 – 12, 2023, 80 retinoblastoma patients, survivors and families from across the US East Coast enjoyed monuments and landmarks around Washington D.C. while making new friends in the retinoblastoma community. Bilateral Rb survivor and WE C Hope USA President and Founding Board Member, Marissa D. Gonzalez, recaps this eventful and emotional weekend in this two-part blog.
https://wechope.org/wp-content/uploads/2023/03/Group-Photo-White-House.jpeg12801920Abbyhttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby2023-03-24 18:00:082023-04-10 10:10:51Retinoblastoma in D.C. Partt 1: A Capital Weekend of Friendship, Community and Fun
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.
4 Reasons Survivors and Families May Not Participate in Retinoblastoma Research, and Ways to Improve Engagement.
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 in D.C. Part 2: A Capital Weekend of Memory-Making and Community Building.
The fun continued throughout the Mid-Atlantic Retinoblastoma Family Weekend in early March 2023. In the second half of our weekend recap, our families take on rock climbing, explore the Kennedy Center, and continue to form vital friendships. Bilateral Rb survivor, WE C Hope USA President and Founding Board Member, Marissa D. Gonzalez, shares more highlights from this eventful and emotional weekend.
Retinoblastoma in D.C. Partt 1: A Capital Weekend of Friendship, Community and Fun
Over the weekend of March 10 – 12, 2023, 80 retinoblastoma patients, survivors and families from across the US East Coast enjoyed monuments and landmarks around Washington D.C. while making new friends in the retinoblastoma community. Bilateral Rb survivor and WE C Hope USA President and Founding Board Member, Marissa D. Gonzalez, recaps this eventful and emotional weekend in this two-part blog.