Capture the Moment at One Retinoblastoma World 2024 in Hawaii
Monday February 5, 2024
One Retinoblastoma World is community, conversation and collaboration for the best lifelong Rb care and support. Previous participants share why the event is so valuable. Rb survivor and WE C Hope CEO, Abby White, considers the many benefits of participating in person compared to attending online, and some ways we can travel “kuleana” to the conference.
Free-flowing conversation during a coffee break at One Rb World 2012 (the founding event) in London, England.
One Rb World is Community, Conversation, and Collaboration
Join us this October for an inspiring convergence of retinoblastoma-focused minds and hearts in beautiful Hawaii. Hosted by World Eye Cancer Hope USA, in collaboration with world-leading Rb specialists led by Dr. Jesse Berry (CHLA), Dr. Sandra Staffieri (RCH Melbourne), and Maura Di Nicola (Bascom Palmer Eye Institute, Miami), this year’s One Retinoblastoma World conference offers an enriching blend of scientific rigor, personal perspective, and profound community.
One Rb World is a unique collaborative effort to advance the holistic and lifelong care of all affected by Rb. We unite to build more empathetic, integrated, and effective approaches to care that encompass both the medical and psychosocial experience.
Families, survivors, medical professionals, researchers, and other advocates each contribute invaluable perspectives to One Rb World. We weaving together scientific knowledge and lived experiences, we explore diverse aspects of the Rb journey – many of which would not be considered in a medical or scientific forum without the advocacy of this meeting.
One Rb world takes place just before the International Society of Pediatric Oncology (SIOP) world congress (October 17 to 20). This presents a seamless opportunity to extend your learning and networking within the broader childhood cancer community. Parents and survivors remain welcome; a family/survivor-focused program runs throughout the full-access event.
We’re committed to inclusivity at One Rb World! We’re proud to offer a low rate for families and survivors, and reduced rates for professionals attending from low and lower-middle-income countries. Children attend for free, though every child must be registered individually on a family ticket.
Attending One Rb World this year in Hawaii, you will experience:
Social Day (Monday October 14, 2024)
Before we delve into the heart of our conference, we invite you to unwind from your long flight and connect with others. Our informal Social Day is dedicated to casual conversation, rest, rejuvenation, community, and fun, setting the stage for the meaningful connections and collaborations that will flourish in the following days.
Family and Survivor Day (Tuesday October 15, 2024)
Our formal conference program begins with a day specially crafted for families and survivors. Expect a mix of presentations, panel discussions, and breakout sessions, led by a diverse group of speakers. This day is about learning, understanding, sharing, and healing, and forming and strengthening bonds that sustain us – both individually, and as a community advocating with hope.
2-Day Scientific Program (Wed-Thurs October 16-17, 2024)
These two packed days bridge the latest research and real-world experience. Each session, co-facilitated by medical professionals and either a parent or survivor, will blend evidence-based information with personal perspective. Together, we will advance understanding and empathy, identify areas of challenge and need, and discuss potential practical solutions.
Read more about the 2024 Conference Program
Children’s Program (Tuesday 15 – Thursday 17 October)
Throughout the conference, we offer a special program for children diagnosed with retinoblastoma, their siblings, and children of adult survivors. Led by Certified Child Life Specialist, Morgan Livingstone, this fun program includes a mix of free-play and structured activities. Many are carefully designed to help children understand their experiences with eye cancer, fostering emotional resilience, active engagement in their healthcare journey, and mutual support.
Read more about the Child Life Program
Waikiki Beach
Fabulous Waikiki Beach in Honolulu is just one short block from our ocean-view hotel. The coral sand and calming turquoise sea forms an inspiring backdrop to our conference; a gentle ally for reflection, release, and restoration. While the Hawaiian spirit of Aloha adds a unique dimension to our shared focus of advancing care for all.
Rb Survivor Clayonia Colbert-Dorsey met other survivors for the first time at One Rb World 2017. She has since become a strong advocate for global retinoblastoma. Here, she and WE C Hope USA President, Marissa Gonzalez, capture the earliest moments of their friendship and collaboration in D.C.
Sharing Knowledge and Experience, Building Hope
One Rb World 2024 is far more than a medical conference for parents and survivors. It’s a catalyst for change, and a homecoming for all of us touched by retinoblastoma – whether family members, survivors, professionals, scientists, or other dedicated advocates. Your participation is pivotal, for yourself, and for the advancement of our global community.
For the Individual (Family Member, Survivor, Professional)
Participating in One Rb World 2024 is an opportunity for transformation. You gain rare access to the latest developments in retinoblastoma care and research. More importantly, you become part of a community that wants to hear about, understand, and support your journey. The connections made here can last a lifetime, providing a network of comfort, strength, encouragement, and motivating shared experience.
For the Collective Retinoblastoma Community
By participating in One Rb World 2024, you are part of a global movement striving for excellence in retinoblastoma care for all, throughout life. Your unique insights and experiences enrich the collective understanding.
Together, we explore both medical knowledge and the lived experience of retinoblastoma at all stages of life. We challenge the boundaries of what is acceptable and possible in children’s care, psychosocial support, and survivorship, and we collectively reshape the future of lifelong retinoblastoma care worldwide.
Hear reflections from professionals, parents, survivors, and scientists at One Rb World 2017 in Washington D.C. for a taste of what you can expect in 2024 – bigger, brighter, bolder for the best care possible!
The Many Benefits of Meeting In-Person
Since 2017, WE C Hope has live-streamed many One Rb World sessions, making them available after the event. We know this removes barriers for those who cannot travel due to cost, health constraints or other practical challenges. So we are delighted to offer the 2024 program in a hybrid format, extending knowledge and collaboration to all corners of the world.
However, nothing can replace the power of immediate, present human interaction at the heart of the One Rb World experience.
While virtual attendance offers access and convenience, being physically present in Honolulu offers a richer, more immersive experience. In-person interactions foster deeper connections, collaborative opportunities, and a shared sense of purpose and commitment.
For example, virtual attendance means:
Limited Personal Connection
Remote interaction lacks the depth of in-person connections that are crucial for families, survivors, and professionals alike managing the psychosocial impacts of retinoblastoma. This can reduce the level of empathetic understanding and support, influence the way experiences and knowledge are received by others, and distort learning and progress in patient care.
Restricted Access to Experts
Online attendees miss out on direct conversation with multi-disciplinary specialists and researchers from around the world. These individuals are leaders in retinoblastoma, childhood cancer care, psycho-oncology, survivor care and holistic support.
In-person participation creates opportunities for individual discussion, clarification, and personalized advice that are not possible with virtual access.
Fewer Networking Opportunities
The virtual format offers very limited opportunity for spontaneous networking, which is vital for researchers, professionals, families, and survivors to form collaborative relationships and support networks.
Less Effective Child Life
Children cannot truly interact with activities designed uniquely for our retinoblastoma community. This 3 day program for children in Hawaii will offer only 1-2 brief virtual session per day due to cost and practicality.
Children joining virtually will miss the one-to-one interaction and tailored support of child life specialists experienced in caring for young families affected by retinoblastoma.
Selective Learning and Progress
Remote access can encourage participants to select the sessions they attend, leading to missed opportunities for holistic learning and insights across diverse aspects of retinoblastoma care.
Reduced Program Access
To respect participant privacy, some aspects of Family/Survivor Day can only be experienced in-person, or in real-time in virtual format, and will not be available to view in our sessions hub after the event. Breakout sessions also will not be live-streamed or videoed for later viewing due to cost and logistics. These aspects of the program will only be open to in-person participants in Hawaii.
Virtual attendees will also miss out on key aspects of the conference beyond the formal program, such as organized social events, impromptu discussions, and informal gatherings. All of these aspects make the in-person experience more memorable, meaningful and transformative.
Time-Zone Complications
The schedule may pose challenges for virtual attendees depending on their time-zone relative to Hawaii (GMT-10). Sessions that are planned for optimal hours in Hawaii might translate to inconvenient times around the world, leading to missed opportunities, or participation at less than ideal hours.
This can make it difficult for virtual attendees to benefit from live interactions, and potentially impact the way information is shared and absorbed.
Missing the Healing Locale
Virtual attendees will miss out on the therapeutic, rejuvenating benefits of Hawaii’s serene tropical environment, which can offer mental restoration, well-being, and a sense of retreat. Not being physically present also means missing the holistic healing and connection embodied in Hawaii’s traditional spirit of Aloha, a key aspect of day-to-day culture throughout the islands.
For all these reasons, we are excited to finally gather in Hawaii, and share the many benefits of in-person meeting we have missed so much.
A dedicated Rb auntie from Poland talks with Canadian ocular oncologist, Dr. Katherine Paton at One Rb World 2017.
Families, survivors, and professionals gather at the Jefferson Memorial in Washington D.C. during a fun private bus tour of the city during One Rb World 2017.
Dr. Sandra Staffieri (Royal Melbourne Children’s Hospital, Melbourne, Australia), and Ligia Fu MD (Hospital Escuela Universitario, Tegucigalpa, Honduras) first met at One Rb World 2012 in London, England. Their friendship and collaboration as two of the most influential Rb early diagnosis researchers has evolved thanks to One Rb World meetings.
A plain old box can become anything to a child with boundless imagination. Once decorated, this one became a car, a ship, a plane, a hospital waiting room, a queen’s castle, and a safe place to chat with new friends – right in the middle of free play during the child life program at One Rb World 2017.
Travel with Climate Care to Hawaii
Several people have expressed their conflicted feelings about wanting to attend One Rb World in person, to reap its many benefits, while also concerned about the environmental impact of long-haul flights. Our international team have the same concerns.
We are seeking ways to make this year’s One Rb World as environmentally friendly as possible, and to reduce our individual carbon footprint as we travel to Hawaii. We hope the following practical suggestions may be helpful to you as you make travel decisions and plans.
Choose Low-Carbon Airlines
Choose airlines that have more environmentally conscious practices and use more fuel-efficient aircraft. Here are three easy ways to identify these airlines:
- Look for IATA’s Environmental Assessment (IEnvA) Program This is an independent environmental management and evaluation system for the airline industry. Certification shows the airline is committed to higher environmental standards. Programs like Airport Carbon Accreditation also indicate an airline’s commitment to managing and reducing its carbon footprint.
- Independent environmental rating programs like Skytrax and Atmosfair provide rankings for airlines based on their environmental performance.
- Check if the airline offers a carbon offset program and whether that program is transparent and certified by credible organizations. This may not be obvious during the booking process – you may need to look for a specific sustainability (or similarly labelled) tab for information and options. Airlines that directly invest in sustainable projects and environmentally responsible practices are preferable to those that only offer customers the option to pay extra for carbon offsetting.
Elli the retinoblastoma elephant gets ready to fly from LA to Washington D.C. for One Rb World 2017.
Invest in Carbon Offsetting Programs
Carbon offsetting programs encourage businesses and individuals to invest in environmental projects to compensate for the carbon emissions their activities cause. They are based on the principle that, since climate change is a global issue, reducing emissions anywhere has the same positive impact on the environment.
With a quick google search, you can find diverse opportunities offered by partners in your country. They typically support projects like renewable energy, reforestation, habitat conservation, and sustainable development in communities most affected by climate change. The United Nations offers a carbon offsetting program that anyone can participate in, supporting varied projects throughout the developing world.
Travel “Kuleana” in Hawaii
The Hawaiian word for responsibility is “kuleana”. During your stay in Hawaii, take actions that help to protect and preserve the local environment. For example, choosing alternatives to car hire, avoiding plastic waste, observing wildlife preservation laws, and supporting local Hawaiian businesses. We support responsible travel and put together 10 top tips for being kuleana during your visit to One Rb World 2024 in Hawaii.
Join us at One Rb World 2024!
One Rb World 2024 in Honolulu is a global convergence of hope, knowledge, and action against retinoblastoma. We warmly invite you to be a part of this transformative experience. If you can, join us in person for the very best experience and progress possible.
Being present with us in Hawaii, you can:
- Connect more deeply for greater understanding, support, and shared learning.
- Benefit from real-time one-to-one conversation with other attendees, and the opportunity for more personalized discussion.
- Enjoy spontaneous networking opportunities to form new collaborations and strengthen support.
- Support your kids with personalized retinoblastoma-specific support at the child life program – a rare opportunity to help them understand, cope with, and thrive through their experiences.
- Share with others in exploring a diverse range of topics, and help build the best holistic care for child, family, and survivor.
- Engage fully in all aspects of the conference, including breakout sessions, ad hoc discussions, informal gatherings, and social events.
- Experience the entire formal and social program at the optimal time.
- Enjoy the beautiful welcome and healing environment of our Pacific location, and the uplifting perspective of this unique gathering.
We can’t wait to welcome you to the 7th One Rb World meeting in October!
About the Author
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.
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