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.
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.
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 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 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.
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.
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.
In-person contact with other families and survivors affected by childhood eye cancer is life-changing. On 2-4 December, the Lone Star State shone bright as World Eye Cancer Hope USA welcomed survivors, patients and families from across the state. Marissa D. Gonzalez, bilateral Rb survivor, and President and founding board member of WE C Hope USA, shares highlights from the festive weekend.
