An African doctor looks on as another uses a handheld digital camera to visualise a child's eyes during an exam under anaesthesia.

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.

Headshot of a young child, around 18-months old, with a blue and white pacifier in their mouth. There is the characteristic yellow-white glow in the pupil of their right eye, commonly seen in retinoblastoma and Coats’ disease. Text reads “Early diagnosis is the best cure”

“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.

All the guests smile during a group photo at the Kennedy Center. They are standing beneath a giant photograph of John F. Kennedy.

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.

Families smile while standing in front of the White House gates, bundled up in warm clothes.

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.

A long roads winds through rough country of valleys and hills.

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.

A photo montage of three children with white pupil glow and turned eye early signs of retinoblastoma.

Retinoblastoma Awareness, Screening and Early Detection at One Rb World

Retinoblastoma awareness is the vital first step to cure! Early diagnosis leads to better outcomes for children, with less intense treatment. 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. Below, we share sessions from the 2017,2020, and 2021 meetings.

Two young girls stand together on a large tree stump in a wooded park.

Laughter, Life Lessons and Love Take Root at the Texas Rb Family Weekend

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.

A family gathers around a picnic table for this photo. Some are sitting, some standing, all smiling. Several people are wearing childhood cancer awareness gold ribbons and t-shirts. One girl’s t-shirt reads “I am a fighter; childhood cancer awareness”. The stick part of the letter H in “fighter” is replaced by a gold ribbon. ¬¬¬¬¬¬Across the table, a young child’s t-shirt bears another gold ribbon, and the words “for my sister”. A woman stands behind wearing a t-shirt with a big gold ribbon printed over a repeated series of words in various fonts – the words include “fighter, warrior, brave, believe, courage, hope, love”.

Sun and Smiles Shine at the 5th Annual Southern California Retinoblastoma Family Day

In-person contact with other families and survivors affected by childhood eye cancer is life-changing. On November 5th, World Eye Cancer Hope USA hosted 80 retinoblastoma community members for a picnic party in glorious fall sunshine.  Marissa D. Gonzalez, bilateral Rb survivor, and President and founding board member of WE C Hope USA, shares highlights from the day of sunshine and smiles.

A faded portrait of a toddler Marissa and her grandmother, sitting together on outdoor steps.

Living With Vision Loss: Challenges and Changing Perspectives

For many survivors of bilateral retinoblastoma, vision changes throughout life. This may be due to treatment late effects, eye health, or other medical events. World Eye Cancer Hope USA President and founding board member, Marissa D. Gonzalez, recounts her journey with vision loss during two different seasons of life, and her difficult course with acquired blindness as an adult after decades of good sight.

A female doctor wearing green scrubs, surgical mask, and a brightly coloured scrub cap, sits on a play area with a child patient. She has placed her stethoscope on the child’s doll. The child is facing the doctor, mostly out of frame, and is using a toy stethoscope to mirror the doctor’s actions.

10 Child Life Tips for Clinicians

Medical appointments, procedures, and treatments are potentially stressful for children and their families, at all stages of their retinoblastoma experience. Child life specialist Morgan Livingstone shares 10 simple ways all medical professionals can ease stress and anxiety, support healthy coping, and help children and families thrive throughout simple interactions and complex cancer care.