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.jpeg10961655Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2023-04-24 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.jpeg19202560Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2023-04-10 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.jpeg12801920Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2023-03-24 18:00:082023-04-10 10:10:51Retinoblastoma in D.C. Partt 1: A Capital Weekend of Friendship, Community and Fun
Retinoblastoma follow up care is vital for all children after treatment, and for many survivors throughout life. The end of cancer therapy brings both celebration and uncertainty. Knowing what to expect can help calm worries and empower strong advocates. Child Life Specialist Morgan Livingstone reviews what follow up care may involve, and tips to help families and adult survivors navigate this stage of medical care.
https://wechope.org/wp-content/uploads/2023/03/long-winding-road.jpg615820Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2023-03-13 07:20:432023-03-13 07:20:43Retinoblastoma Follow Up Care: the Long and Winding Road
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.
https://wechope.org/wp-content/uploads/2023/01/EyeCancer-awareness.png9101080Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2023-02-27 06:52:372024-12-09 16:40:55Retinoblastoma Awareness, Screening and Early Detection at One Rb World
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.
https://wechope.org/wp-content/uploads/2022/08/Group-Video-Capture1.jpg492873Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2023-02-13 01:16:252023-06-05 10:02:35Ethnography: A New Frontier in Retinoblastoma Research
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.
https://wechope.org/wp-content/uploads/2019/06/Fanaka_EUA1_31Aug_1.jpg16791979Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2023-01-30 10:00:042023-06-05 10:03:42TNM Staging System for Retinoblastoma
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.
Events that unite our retinoblastoma community are vital for mutual support and collaboration to advance care for children, adult survivors, and families. They all happen thanks to dedicated volunteers. In the second of this 2-part post, we explore the many ways volunteers support our work, benefits to both the individual volunteer and community, and how you can help.
https://wechope.org/wp-content/uploads/2017/10/Thomas-Mark-and-Lisa-Hester-Reading-online-questions.jpg17562500Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2023-01-02 10:02:142023-01-08 19:28:14You Can Help Change Retinoblastoma Care: Volunteer with WE C Hope
Retinoblastoma is a rare childhood cancer with unique family and lifelong impacts. Events that bring our community together are vital for mutual support and collaboration to advance care. They happen thanks to dedicated volunteers. In part 1 of this 2-part post, we focus on Family Days and the One Rb World conference, planned and hosted entirely by volunteers.
https://wechope.org/wp-content/uploads/2022/11/Lisa-Marissa-Kristen-scaled.jpeg17072560Abby Whitehttps://wechope.org/wp-content/uploads/2015/08/WeCH-Logo-web2.jpgAbby White2023-01-02 10:01:512023-01-02 10:01:51Volunteers Change Retinoblastoma Care: Family Days and One Rb World
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.
Retinoblastoma Follow Up Care: the Long and Winding Road
Retinoblastoma follow up care is vital for all children after treatment, and for many survivors throughout life. The end of cancer therapy brings both celebration and uncertainty. Knowing what to expect can help calm worries and empower strong advocates. Child Life Specialist Morgan Livingstone reviews what follow up care may involve, and tips to help families and adult survivors navigate this stage of medical care.
Retinoblastoma Awareness, Screening and Early Detection at One Rb World
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.
Ethnography: A New Frontier in Retinoblastoma Research
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.
TNM Staging System for Retinoblastoma
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: Types, Challenges, Opportunities
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.
You Can Help Change Retinoblastoma Care: Volunteer with WE C Hope
Events that unite our retinoblastoma community are vital for mutual support and collaboration to advance care for children, adult survivors, and families. They all happen thanks to dedicated volunteers. In the second of this 2-part post, we explore the many ways volunteers support our work, benefits to both the individual volunteer and community, and how you can help.
Volunteers Change Retinoblastoma Care: Family Days and One Rb World
Retinoblastoma is a rare childhood cancer with unique family and lifelong impacts. Events that bring our community together are vital for mutual support and collaboration to advance care. They happen thanks to dedicated volunteers. In part 1 of this 2-part post, we focus on Family Days and the One Rb World conference, planned and hosted entirely by volunteers.