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Register Now for One Retinoblastoma World 2021 – Sharing Ideas, Opportunities and Friendship
Monday September 13, 2021
As the 6th One Retinoblastoma World Conference fast approaches, this year’s organizers Sandra Staffieri and Marissa Gonzalez, together with Megan Webber, are excited to share an update. They give an overview of the program, highlighting some of the sessions and goals, and the need for global discussion and collaboration involving all stakeholders.
Who would have thought back at the inaugural One Retinoblastoma World Conference in 2012 that we would be here today? In just three weeks’ time we will gather from all corners of the world to share ideas, experiences, opportunities and above all friendship. What brings us together is a shared experience of retinoblastoma, as clinicians, survivors, parents and extended family members.
Early diagnosis, medical care, family support, and collaborative research benefitting the majority of children and survivors can only progress through inclusive meetings with a real-world focus. One Rb World sessions are co-led by medical professionals/researchers and parents/survivors with expertise and lived experience of retinoblastoma, providing a unique forum in which to advance our understanding, ideas, solutions, research, and global collaborations.
Just as last year, we will meet in the virtual world due to COVID-related travel restrictions. We are sad not to meet in Hawaii as hoped, before the International Society of Paediatric Oncology World Congress (now also virtual), but this year’s meeting retains a distinctly Pacific feel.
Truly a benefit we had not imagined at the time, last year’s virtual meeting provided opportunity for more people from around the world to attend and actively participate. One Rb World 2020 brought together 199 people (82 medical professionals and researchers, 117 patients, survivors, and family members) from 37 countries across six continents for our first fully virtual meeting.
And so, we will gather again virtually from October 1-3, 2021 to celebrate progress, identify new and ongoing priorities and objectives, and plan a way forward together. Through One Rb World, we continue to work towards the collective goal of equal and early access to retinoblastoma care for all children, and lifelong care for survivors – no matter their socioeconomic status or where they live in the world.
Day 1 – Survivorship in Focus
A key focus of every One Retinoblastoma World conference is survivorship. Living with retinoblastoma can bring its own challenges. The first day of programming will include a keynote presentation by Cheryl Newman(Melbourne, Australia) who will share her experiences as not only a retinoblastoma survivor, but also as a parent of a now young adult who also had retinoblastoma. This will be followed by a panel discussion led by survivors who will share their experiences and answer questions from the audience.
We will then turn our attention to Survivorship and Second Cancers, with a presentation led by David Freyer, Director of the LIFE program at the Keck Hospital, University of Southern California. David will share with us his expertise, knowledge and current research relating to the development of second primary cancers.
Helen Dimaras (Toronto, Canada) will chair a session on retinoblastoma genetics, updating knowledge, sharing progress and, discussing new horizons in genetic research.A full session will follow devoted to managing prosthetic eyes, including socket rehabilitation, and strategies to help younger patients manage the often-invasive process associated with making new prosthetic eyes.
At the end of the day, we will host virtual breakout rooms, providing attendees the opportunity to meet people from around the world to share thoughts and ideas on the many aspects of survivorship.
Dr. Jesse Berry answers an audience question during the Genetics session, while fellow panelists listen.
Day 2 – Living Life Without Limits
We will open the second day with keynote speaker Sarah Yang (Melbourne, Australia), a young adult survivor who will describe aspects of her limitless life, including attending university, her passion for rock-climbing and racing solar cars. Inspired by a parent’s comment last year who shared that through the One Rb World conference, she could see hope for her child, Sarah will then present a montage of children and adults from all around the world, living life and doing what they love most.
Pernille Gregersen(Aarhus, Denmark), will lead the discussion on Taking care of our mental health. Survivors, parents, and clinicians all need to consider the impact retinoblastoma can have on mental health. Child Life Therapist, Olivia Larkens(Melbourne, Australia) will discuss strategies to mitigate the psychosocial impact of invasive treatment on children and young-adult survivors. Grace Dillon(Brisbane, Australia), will discuss “the little things that matter”, including when or how to tell friends about the personal cancer story, and manage questions from peers.
With mental health still at the heart of the discussion, we will devote an entire session to “The Dreaded Eye Drops”. Without a doubt, eye drop anxiety is one of the biggest issues a child faces, as eye drops are integral to retinoblastoma eye examinations, treatment and ongoing ophthalmic care. Rb Care Co-ordinator, Sandra Staffieri(Melbourne, Australia) will review why eye drops are so important, and parent Belinda Faure(Melbourne, Australia) will highlight the challenges her young son is experiencing in trying to manage his distress and fear around receiving eye drops. Finally, Olivia Larkens(Melbourne, Australia) will provide some useful strategies to help prepare your child for the administration of eye drops, language to use, and how you can support them through the procedure.
We will host free-flowing discussion of these sessions in our virtual break out rooms. This important time in open conversation helps normalise the subject of preserving mental health for all who are impacted by retinoblastoma, and providing care.
The last session for the day, “Raising Awareness of Retinoblastoma: Thinking Outside the Box!” will be led by Retinoblastoma Care Co-ordinator, Sandra Staffieri(Melbourne, Australia) and parent Paula Dillon, (Brisbane, Queensland). Information and Research Manager for the Childhood Eye Cancer Trust, Petra Maxwell(London, UK), will join Jo Croft (Adelaide, Australia) from Sight for All, and Bhavna Chawla (New Delhi, India) on the session panel. Together, they will outline new and innovative ways to raise awareness of retinoblastoma, and its most common signs.
Day 3 – Progress, Possibility and Hope
After the keynote address by adult survivor Clayonia Colbert-Dorsey (USA), we will be taken on a tour of the world by Swathi Kaliki(Hyderabad, India), Minh Chau (Hanoi, Vietnam), Viviane Lanzelotte (Rio de Janiero, Brazil) and Sandra Staffieri (Melbourne, Australia) who will share updates of retinoblastoma in their country and region.
Megan Webber (Los Angeles, USA) together with Dr Andrew Blaikie (Scotland), Larry Wagh (India), and Cindy Mays (USA), will speak on the topic of “Global Retinoblastoma Detection and Glow Awareness”. Topics will include early detection possibilities via the innovative ArcLight Scope, blindness prevention potential through KnowTheGlow’s global awareness campaign, and shared examples of parent organization activities, building networks and developing local and international outreach opportunities.
Following this session, our breakout rooms will open for the final virtual networking session. An opportunity to share our thoughts and ideas on the topic: “Global Awareness: Who? What? When? How?”
Led by Helen Dimaras and Clayonia Colbert-Dorsey, the topic of “Ethnography in Retinoblastoma” promises to be an interesting and thought-provoking discussion. Understanding the influence of different cultures, beliefs, and customs on receiving or living with a retinoblastoma diagnosis can better inform and foster a mutual respect for decision-making by individuals around the world.
And finally, during an extended session, “Looking to the Future: what’s new in treatments and research?” will provide insights to recent advances in retinoblastoma therapies, and current and future research projects. Ashwin Mallipatna (Toronto, Canada) will describe an exciting, large scale review of the medical literature around the value of the red reflex test, and Pernille Gregersen (Aarhus, Denmark) will share her recently published research exploring survivors’ perspectives of living with retinoblastoma.
Partiticpants share their thoughts and experience of One Rb World 2017 in Washington D.C. Use the menu in the top right corner to navigate between the three videos sharing feedback from professionals, parents and survivors.
9:20-9:50am PDT: Child Life Session (running simultaneously)
9:20-10:10am PDT: Retinoblastoma Around the World
10:15-11:05am PDT: Awareness Campaign
11:05-11:30am PDT: Breakout Networking Session
11:30am-12:20pm PDT: Ethnography in Retinoblastoma
12:20-2:20pm PDT: New Treatments and Research
2:20-2:30pm PDT: Closing Remarks
Register Now to Join the Conversation
Over these three days, an exciting and varied program has been created so we can continue to work together for success. So far, over 80 survivors, parents and professionals from 21 countries across six continents have registered to join us.
In addition, 43 bookings have been made for the daily 30-minute child life activity sessions for children diagnosed with retinoblastoma and their siblings. These fun and therapeutic activities will be led by Morgan Livingstone (Toronto, Canada) and Olivia Larkens (Melbourne, Australia).
We hope to welcome you too. Please register today and be part of the best future we can create for all children, survivors and families affected by retinoblastoma around the world, and all who care for them.
Starting times vary each day to accommodate our global community – please check the date and time zone that applies to you in the program summary above. We are providing swag bags and activity materials for the children’s program (mailed from Los Angeles) – please register promptly to avoid late arrival of the pack.
We look forward very much to welcoming you to One Rb World on October 1-3!
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.