One Rb World 2021: Planning, Creating, Sharing and Raising Hope Together

Monday October 25, 2021

On 1-3 October, we hosted a hope-filled One Rb World 2021 meeting. Planning and hosting is always an adventure, and the 6th One Rb World was especially so! 2021 Co-Chairs, Dr. Sandra Staffieri PhD, Retinoblastoma Care Co-Ordinator, Royal Children’s Hospital, Melbourne, Australia, and Marissa Gonzalez, Bilateral Rb Survivor and President, World Eye Cancer Hope USA, share behind-the-scenes insight and conference highlights.

A zoom screenshot shows 2 video panels. On The left, Marissa is wearing yellow and green pineapple sunglasses, and a blue floral lei around her neck. She is introducing Sandra, who is in the video panel to the right, smiling and wearing a yellow and orange lei. A tropical sunset ocean scene is visible behind her.

Marissa Gonzalez introduces Sandra Staffieri as One Rb World 2021 begins.

Part 1: Together We Can Do So Much

A small tenacious team and major global challenges: planning One Rb World 2021…

By Dr. Sandra Staffieri PhD, Retinoblastoma Care Co-Ordinator, Royal Children’s Hospital, Melbourne, Australia.

If I Knew Then What I Know Now…

I have had the pleasure and good fortune to attend every One RB World conference since its inception in 2012. At this first meeting in London, I was amazed at how parents, survivors, and clinicians from around the world came together and were able to raise and discuss issues relevant to them. There was a unique shared understanding between clinicians and parents/survivors; I could see then the only way to move forward was to do this together – as a team.

As a clinician, with each successive conference I develop a deeper understanding of the parents’ and survivors’ lived experience which greatly impacts my approach to providing both clinical and supportive care. Similarly, I am sure parents and survivors have benefited from being heard, and understanding the challenges that clinicians face in providing care.

The conferences have gone from strength to strength, and moved around the world in tandem with the SIOP (International Society of Paediatric Oncology) world congress. Even a pandemic could not stop us; the 2020 conference was conducted on a virtual platform, following a successful livestream addition to the 2017 conference held in Washington D.C.

Several years ago, I was asked if I would co-convene the 6th One Rb World Conference in Hawaii, as this was the closest the meeting would get to Australia for some years. Naturally, I jumped at the opportunity and said “YES!” I would worry about the “How will I fit this in?” later. At the time, I was only dreaming of white sandy beaches, palm trees and swims in the sea, and what better reason to travel to Hawaii? I certainly wasn’t thinking of a global pandemic gripping the world at the same time!

Fast forward 3 years and here we are, still in the throes of the COVID-19 pandemic. I really did need to ask myself not just “How will I fit this in?”, but “How am I going to do this?”. My co-convenor, Marissa Gonzalez, lives in Long Beach, California, and I am in Melbourne, Australia – an 18-hour time difference.  Scheduling meetings meant early starts for one, and a late day for the other – even on weekends.  And that was just the beginning.

The COVID-19 pandemic was (or rather still is) an experience like no other. My workload as Retinoblastoma Care Co-Ordinator at the Royal Children’s Hospital, Melbourne tripled as I navigated co-ordinating treatment for my patients through not one, but SIX lengthy lockdowns. Every day and evening melted into the other on a continuum. Weekdays and weekends were the same, and time really had no meaning.

You would think time would pass more slowly when you cannot go beyond the four walls of your home.  Yet time was passing quickly, and before I knew it, the conference was less than six months away.

We were supposed to be going to Hawaii. I had been dreaming of this event for several years, only to find Hawaii remained a pipedream and I was at home. But we needed to look at the positives where we could. A very successful virtual meeting was held the year before, so the technical “how to” had already been established. We could do it again, we just needed to put together the programming and content.

Indeed, a virtual meeting gave many more people from around the world, from all walks of life, the opportunity to participate in this conference.  So despite the challenges, I am pleased we were able to deliver again.

Slide from Andrew’s presentation, titled “decolonize ‘red reflex”. The ‘red’ reflex is not red in non-white babies.” Below, 3 images show eyes in White European children with red reflex, Asian children with yellow reflex, and blue reflex in African children. Text below says “fundal reflex – reflection from the fundus.”

Describing the diagnostic ArcLight Scope at One Rb World 2021, Dr. Andrew Blaikie from the University of St Andrews, Scotland, highlighted that the term “red reflex” is inaccurate for most non-white people, the majority of global citizens – demonstrated in this slide.  He proposed that “Fundal Reflex more accurately describes reflection of light from the back of the eye.

Programming and Themes

This year, as the Scientific Program Co-ordinator, my first step was to examine feedback from the previous year for inspiration. One parent’s message particularly struck a chord with me: “My child was recently diagnosed with retinoblastoma, and attending this conference gave me hope”.  Since the One Rb World meeting is an event supported by WE C Hope – that was exactly what I wanted to capture – a sense of hope.

Our three keynote speakers, Cheryl Newman from Australia, Sarah Yang from Australia, and Clayonia Colbert-Dorsey from the USA, are all survivors, in spite of everything.  Their stories set the stage each day as one of hope.  Meet each of these beautiful ladies in part 2, below.

We covered sessions relating to survivorship, mental health and understanding retinoblastoma in different centres around the world. We explored awareness and early diagnosis through individual projects, and organisations providing a platform for shared ideas and successes. And we finished with the hope that research will pave the way for progress and change.

This diverse program did not ‘magically’ fall into place. Rather, we tried to respond to suggestions and questions from past participants, and responses to an online survey of the global retinoblastoma community.  We then had to consider who might best be able to answer those questions, and we wanted to reach out to people who had not participated before.

An added challenge was that clinicians, like me, were inundated with trying to manage their changed workload due to COVID. In some cases, seconded to work in intensive care units to relieve their fatigued colleagues.  They were reluctant to decline participation, yet disappointed they would not share in the knowledge exchange as in previous years. Yet one can only stretch themselves so thinly.  The recorded presentations and discussions, coming soon, will enable them to participate in some way.

Trying to ensure we had people from all around the world represented in the sessions was challenging as we could not always accommodate the various time zones. I permanently had a “date/time converter” website open on my computer, ensuring I had the days and times correct for each presenter. It even took me a while to realise the final day would mean a 3.00am start for me!

Where we were challenged by the tyranny of distance and time zones, we still found a way. The work-around of pre-recorded presentations helped, but was not quite the same as the live ‘virtual’ experience that enables questions and thought provoking discussion.  However, it spread the load, and gave us options.

We will not quickly forget the image of Dr Brenda Gallie stopped on the side of the road, giving an update on the progress of a promising new chemotherapy delivery system – chemoplaque – from her car. I thought I had seen it all until that moment! Ably supported by Dr Ashwin Mallipatna in Toronto when the wifi bandwidth was too low, Brenda was still able to deliver her message of hope.

A zoom screenshot shows 2 video panels. On The left, Ashwin is wearing a peach coloured shirt and is introducing Brenda who is in the panel on the right. She is wearing a dark jacket and sits in the passenger seat of a car, with foliage seen through the window. They both have very focused expressions as the screen is about to change to presentation mode.

Ashwin Mallipatna introduces Brenda Gallie, just before her presentation.

Volunteers and Altruism

Bringing the conference together was no mean feat.  With a very small team of Marissa and myself, we worked hard to put the show on the road. Ever trying to be optimistic, such a small team meant more work for both of us.  However, being a committee of just two – occasionally three, did make it easier to schedule meetings and keep track of emails, even with the 18-hour time difference.

Marissa’s Personal Aassistant, Emily Rainbolt, enabled her to complete tasks efficiently despite the challenges of reduced vision, and took on a range of additional tasks.  But we could not do it all, and we were fortunate to access paid administrative support to get us over the line.

Other WE C Hope volunteers were critical in making the event a success. Kristen Small created our program and many of our promotional materials.  And Abby White managed our event promotion from Oxford, England – often bouncing between our very different time-zones to communicate with us and complete these tasks.

Presenters generously volunteered their time, not just to give, but also prepare their presentation. Especially during the pandemic, that commitment means time from work where they are much needed, and takes them away from family or friends, from school, and leisure activities. These volunteers were all busy already, and I was asking them to do more.

In spite of their workload, presenters so willingly volunteered their time, and were richer for the experience, even when English was not their first language.

“I hope everything went well. it was my first presentation in English.

Loving this meeting. So emotional and encouraging too.”

“Thank you for giving me the chance to talk about Vietnamese RB”

It was rewarding to find that, from the parents’ perspective, the clinical information was much valued, educational, and gave hope.

“Advances in treatment give me hope and get me excited for less toxic means of saving more lives and more vision…the session on genetics was fascinating!

This conference is always an inspiring highlight to my year, and I love how the RB community continues to grow closer and more integrated each year.”

So, mission accomplished for 2021.  But there is so much more to do, and we have future conferences to look forward to. Ottawa 2023, and here’s hoping Hawaii 2024 will be more than a virtual background on my screen.  The Spanish community are also just beginning to discuss the possibility of hosting One Rb World next year – the SIOP congress is due to be held in Barcelona.

We can’t do it without you!  The more volunteers who offer time and energy to help plan, organise, implement and support an event like this conference, the lighter the load for each of us.  Watch this space for future events, and please consider joining the planning team – your contribution will make it brilliant!

Zoom screenshot of a slide and inset to the right of Minh Chau presenting. The slide contains 6 images, described clockwise from top left: On a sky blue and clouds rectangle, text says “’nothing we can do can change the past, but everything we do changes the future’ by Ashleigh Brilliant”. Top right, a square box is split horizontally in half. Each half features a child with a white eye glow. In the top half a little boy with dark hair and an orange jacket is seen in Vietnamese countryside, green terraces and dark vegetation far behind. Vietnamese text reads: “ÁNH ĐỒNG TỬ TRẮNG ” CÓ THỂ LÀ DẤU HIỆU CHỈ ĐIỂM CỦA HƠN 20 BỆNH LÝ HOẶC BẤT THƯỜNG TẠI MẮT” Below, a little girl with dark hair and bunches wears a light pink lacy dress, and a happy smile. She stands in front of a grey tree trunk, with a pink building behind. Vietnamese text reads: “THẤY MỘT LẦN, HÃY CẢNH GIÁC THẤY 2 LẦN, HÃY HÀNH ĐỘNG”. Bottom right is a rectangular movie poster, featuring a smiling little girl with dark brown curly hair. Text next to her face says “little Bang’s new eye”. Bottom centre, two children in traditional Vietnamese dress coloured blue, grey and black, with vegetation and a building overhang behind them. Pink clothing is visible under the girl’s traditional dress. She has dark hair and looks like she's wiggling a tooth. The child beside her has no hair and wears a sad or pensive expression. Bottom left: A long rectangular photo is actually a puzzle picture. A woman cradles a child in a hospital setting. She has dark shoulder length hair, wears a greyish vertical striped shirt, and looks down at her child who has a large eye-patch taped in place. Something like blue gloved hands is seen behind the child’s head. Text says: “thank you for helping us restore sight, alleviate poverty and save lives”. Below the text is an abstract letter S in yellow, like two overlapping circles. Text below the logo reads: "Sight for All – a shared vision".

Closing her presentation on the development of a retinoblastoma program in Hanoi, Vietnam, ophthalmologist Dr. Minh Chau, highlighted the life-saving, sight-saving, and hope-building change that comes when we all work together for the child.

Part 2. Shining a Light on Survivors

Meet three resilient, amazing people who don’t let retinoblastoma stand in their way.

By Marissa Gonzalez, Bilateral Retinoblastoma Survivor and President, World Eye Cancer Hope USA

What Does My Child’s Future Hold?

As Sandra explained, in planning this year’s One Rb World conference, we surveyed the online retinoblastoma community to learn what topics they were interested in hearing about.  An overwhelming number of recently diagnosed families wanted to know what the future could hold for their little ones. Would they be able to go to college, would they make friends, would they live a normal life?

This led us to highlight survivors on every day of the conference. We wanted to show survivors of all ages, from different countries, with unilateral and bilateral disease, getting a glimpse into their lives.

Living Fully as a Survivor and Parent

Cheryl Newman, a bilateral survivor who is blind in both eyes, kicked off a trio of inspiring keynote speeches on Friday. She resides in regional Victoria, Australia. Cheryl was diagnosed at 17 months of age and had both eyes enucleated shortly after diagnosis. Throughout her talk, Cheryl candidly shared the fears and “gut-churning anxiety” of having a daughter with retinoblastoma. She and her husband Nick were able to obtain genetic testing when their second child was an infant, and he did not inherit the cancer, nor did he have to endure endless invasive examinations under general anaesthetic.

Through her daughter Rachel’s treatments at the Royal Children’s Hospital in Melbourne, the Newmans met other Rb families, with whom they were able to share their experiences and information, and form a social network.

The importance of knowing about and monitoring second cancer risks was also something Cheryl focused on, as she shared her own experience.  She highlighted the vital need to be followed by a knowledgeable oncologist or survivorship program – a subject explored in more detail during our long-term survivorship care session on day one.

Cheryl says that while her cancer and blindness have a profound effect on her daily life, she refuses to let either stand in the way of living and accomplishing her goals. She incorporates the reality of her situation into her life, but focuses on her passions, which include running her household, traveling, cooking, long morning walks with her husband spending time with friends and family, and her faith.

A zoom screenshot of Cheryl presenting at One Rb World 2021.

Cheryl Newman delivers the opening Keynote, filled with sharp reality, abundant joy, and hope.

Shaped, but Not Defined, By Retinoblastoma

Saturday’s keynote brought the youth and optimism of 20-year-old Sarah Yang. Diagnosed with bilateral retinoblastoma, Sarah had one eye removed as a baby.  She is now in her third year at Monash University in Melbourne, Australia, double majoring in biomedical sciences and mechanical engineering.

Among many wonderful insights, Sarah shared a formative moment from when she was around four years old, in hospital for an EUA.  A nurse sang and played the piano with her, teaching, her to play the classic Australian nursery rhyme “Kookaburra Sits in the Old Gum Tree”.  Despite being in a hospital and knowing she was having surgery, this experience was the foundation of her life-long love of music.

Sarah began playing the piano as a child, soon picked up the trumpet, and was an active member of her high school choir. She counts the day of music-making in hospital as a fundamental point in her life, and is grateful that a beautiful love of music sprang from her cancer treatments.

Conference guests had a glimpse of Sarah in action as a competitive rock climber. Despite being an individual sport, she loves that her climbing friends form a support network for each other, cheering everyone on during competitions.

At University, Sarah builds Formula One style race cars for Monash Motorsport, the school’s racing team. She walked everyone through the process, from conception of a piece of the car, to a model, to 3D printing, and putting the pieces together. She loves the challenge of conceptualizing pieces and watching them come to life. Sarah can be found cheering on the team’s drivers at competition, and has learned the value of teamwork with her fellow race car enthusiasts.

Sarah plans to pursue a master’s degree, and possibly a doctorate, and counts biomedical engineering as a possible career goal. She says she is “shaped but not defined by retinoblastoma,” and we can’t wait to watch Sarah’s trajectory.

A slide from Sarah’s presentation, titled “Thank You”, with a single photo and the One Rb World 2021 Logo below. In the photo, Sarah sits on a rock structure at the top of a mountain. Her body is facing to the left, her legs outstretched, and her feet resting on a different rock. She is leaning against the rock she is seated on, looking away from the camera at the view. Slivers of blue sky peak through the blanket of clouds, and in the distance, many trees, farms, fields and national parkland can be seen from this high vantage point.

Climbing mountains is a tiring adventure. Sarah always enjoys a rest at the top to enjoy the view!

More Than Conquerors: Hope, Legacy and Resilience

Clayonia Colbert Dorsey closed the triangle with the weekend’s final keynote speech, titled “More Than Conquerors: Hope, Legacy and Resilience.”

Clayonia had never met another retinoblastoma survivor until 2017, when she learned that the One Rb World Conference would be held only one hour from her Maryland home.  She signed up, and says that over the course of the three-day conference, her life was changed.

Meeting survivors, parents, and clinicians from not only the USA, but around the world was something she never dreamed of. Over the past five years, she has turned these friendships into a life-long family, and uses her enthusiastic and empowering personality to reflect on the resilience she has learned throughout life.

Growing up, no one in Clayonia’s family had heard of retinoblastoma, and her parents had no connection to other families to help them cope. Strong family bonds included her grandfather, a Tuskegee Airman, who taught her the importance of resilience and strength.

Clayonia has become a passionate advocate for the retinoblastoma community, and a beacon of light for many survivors. She says, “Life brings struggle, and struggle births hope.” She hopes everyone listening to her talk knows they are worthy and enough as cancer survivors.

A picture frame includes five photos. On the left, Clayonia is pictured with her family - couple stand together with three young children. In the middle, three photos show Clayonia at One Rb World 2017. To the right is a selfie photo of Clayonia. Text below the frame says “We See Hope”

Clayonia celebrates the hope One Rb World has brought, and continues to bring, to her life.

Life Without Limits

Another weekend highlight was the memorable slideshow of a dozen retinoblastoma survivors from around the world in our “Life Without Limits” segment. Each slide depicted survivors doing their hobbies and living their lives, with description of both the images, and the story of the survivor’s photo. Learning more about our Rb community was a fun way to connect us all.

Our hope in presenting the trio of amazing keynote speakers was to show that despite a retinoblastoma diagnosis, survivors can lead fulfilling, mostly normal and productive lives. This disease comes with incredible challenges mentally, physically and emotionally, and at no point are we trying to diminish the experiences of Rb survivors or their families.

We all know to varying degrees the toll a cancer diagnosis can have on an individual and family, and each of our speakers has endured their fair share of difficulties along the way. However, our aim for this conference was to show strong, independent people who are thriving and surviving.

Building the Global Community

Having attended One Rb World in 2016, planned it in 2017 and 2021, and assisted with planning in 2020, I found this year’s conference enlightening and inspiring.

Personally I was thrilled to hear how many people’s lives were altered by attending the 2017 conference in Washington D.C. Watching people become engaged and integral parts of the retinoblastoma community over the past five years has been beyond gratifying. Three people who were guests in D.C. became panelists and moderators in 2021, and this really displays the impact and importance of the conference.

The bonds are strengthened with each conference, with each opportunity to share stories and challenges, and sometimes a cleansing cry.

Zoom screenshot showing 4 video panels with Olivia and child participants. In the top left panel, Olivia is holding up an eyedropper. In the top right panel, we see the girl’s milk rainbow has turned a dark grey-blue-green. The girl on the bottom right is looking down towards her project, but the art projects are not visible in-frame on the bottom two panels.

In the second interactive Child Life session at  One Rb World 2021, Olivia Larkens from Royal Children’s Hospital, Melbourne, helped children make mesmerising rainbows with milk, food colouring, and dish soap, using eye droppers to add and mix the colour.  As they watched the merging colours gradually turn dark, they talked about the confusion of having lots of mixed up feelings, and different ways they can help calm their hurting hearts.

Closing the session, Olivia showed the children that she had been using an old eyedropper from the hospital, previously used to give real drops to children. Items from the hospital that cause fear and pain can also be used by children to create fun and beauty and familiarity in a safe way.

About the Author

Sandra Staffieri is the Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital (RCH) Melbourne, Australia. Working at the RCH and in private clinics, she has over 35 years’ experience in children’s eye health and disease.  She is co-convenor for the 6th One Retinoblastoma World Conference, together with Marissa Gonzalez, President of World Eye Cancer Hope USA.  Megan Webber is co-founder of Know the Glow, an non-profit improving early diagnosis of retinoblastoma by raising awareness of leukocoria related eye disease.

Sandra smiles broadly. Dark red glasses dominate her face. She is wearing a blue dress and a hot pink scarf.

Marissa Gonzalez resides in Southern California and is an event director. She is a founding board member, and current President of World Eye Cancer Hope USA, and was Event Chair for the One Retinoblastoma World Conference in 2017. In her downtime, Marissa enjoys travelling and going to Disneyland.

Marissa, smiling and wearing a fascinator
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