Ohana: The Beating Heart of One Retinoblastoma World 2024
Monday July 22, 2024
Though small and far-flung, our global retinoblastoma family stands strong together. Members of WE C Hope USA’s Board of Directors and past One Rb World participants explain how this conference unites us and strengthens ohana. In trial, grief, hope, and triumph, we share and learn from our collective experience, support one another, and strive to care for all.
A small group breakout session at One Rb World 2017.
Finding Family in the Global Village
This October, the global retinoblastoma community will gather in Honolulu, Hawaii, for the 7th One Retinoblastoma World conference. All who attend are united by a shared goal: to advance care, cure, and support for everyone affected by childhood eye cancer and ifs lifelong reach.
At the heart of this conference lies the understanding that every participant – whether a caregiver, clinician, survivor, or scientist, is an integral part of a global family, striving together for best care and outcomes.
In Hawaiian culture, “Ohana” represents a deep sense of family that extends beyond blood ties to include friends, community, and all who are important in one’s life. This concept emphasizes mutual respect, cooperation, and the belief that families are bound together; that members must think of and support one another to ensure mutual wellbeing.
The spirit of Ohana permeates our One Rb World conference. We create an environment where every voice is valued, and every experience enriches the collective journey.
One Rb World brings together diverse perspectives – from parents and survivors to clinicians and researchers. We share each below through insight from WE C Hope USA Board members and past event participants. They create a holistic view of retinoblastoma that enhances both the scientific understanding and supportive community we need for comprehensive, compassionate acute and lifelong care.
Parent Perspective
Lisa Hester
Rb Mom and WE C Hope USA Board Member
“It was at the 2017 One Rb World conference in Washington D.C. that I first encountered World Eye Cancer Hope and the tremendous power of this conference. My son’s doctors were in attendance as well as top pediatric oncologists from around the world.
I felt empowered as a parent to participate in conversations because the format of this conference puts every attendee on a level playing field. Doctors are referred to by their first name, survivors tell their stories and inform medical professionals how and what they need to shape their healthcare journey, and parents engage in breakout sessions with physicians from a multitude of countries.
One RB world is an unparalleled opportunity for connection – for me, and my family. As a parent, I receive support and encouragement from families who understand how difficult this journey has been. I am also inspired and filled with hope as I learn from the medical professionals who are pushing towards better care and treatments for RB kids.
I can’t wait to take my Rb survivor son, Elijah, and his siblings to Hawaii so they can participate in the child life program that will run for the entirety of the conference and incorporates medical play.
At One Rb World, both my RB child and his siblings get to feel less alone in the midst of a rare diagnosis. They meet other children with prosthetic eyes, or other children who went through chemo. Even siblings have the chance to connect to other siblings who uniquely understand what it was like to have such a life-altering journey as a family.
This conference has become an inspiring highlight to my year, and I love how the RB community continues to grow closer and more integrated with each meeting.”
Mark, Lisa, and Rb survivor Thomas Reid monitor livestream communications at One Rb World 2017, reading comments and asking questions on behalf of viewers around the world during Q&A and open floor discussions.
Mark Billings
Rb Dad and WE C Hope USA Board Member
“Being involved with One Rb World is extremely personal for me. My daughter, and my wife, are both retinoblastoma survivors. Experiencing their journey through treatment and related challenges is empowering and has driven me to help others in similar situations.
Like with an extended family, I want to ensure that every family facing this battle accesses the best care, support, and information available. Knowing that my family’s experiences can educate, inspire hope, and foster a sense of community keeps me motivated.
Meeting the experts behind the design and development of treatments for retinoblastoma, along with other related experts, such as geneticists and ocularists who support the community, in such a collaborative setting, has been extremely fulfilling.
More importantly, they listen intently and respect all the stories of the survivors and their families. They are there to learn from the whole community to improve care for everyone impacted by the disease. It is great to feel that even with a non-medical background, our contributions are valued by the medical community.”
Find Your Ohana at One Rb World in Hawaii
One Rb World fosters connections that support and empower all family members. Join us in person to enhance these bonds, and engage fully in the shared experience of collaborating for best care, and life-changing mutual support.
By exploring the anaesthetic mask on her own terms – squeazing, biting, and chewing – this little girl develops confidence to use it as intended, holding it up to her mouth ready to practice deep breaths.
Older children like to take on the role of doctor, exploring and developing confidence by practicing procedures on medical play dolls first.
Survivor Perspective
Clayonia Colbert-Dorsey,
Rb Survivor and WE C Hope USA Board Member
In 2017, after finding the Adult Rb Survivors group on Facebook, I was thrilled to learn that a conference was being held in the Washington, DC Metropolitan area, where I happen to reside. I explored the WE C Hope website for additional details; registered to attend; and from there, nothing has been the same!
For more than 30 years, I agonized, never having met anyone else who had retinoblastoma. When I walked into the 2017 One Rb World conference, I knew, and continue to say, “I have found my tribe.” Immediately, I encountered a sense of peace, freedom, and belonging – unlike anything I had previously encountered.
From those days together, I have developed long-standing relationships with other survivors and their families. I have developed a stronger voice as an RB survivor-advocate; and I am honored to say that I now serve on the USA Board of Directors. It is indeed a blessing to have found WE C Hope, which I view as true extension of family. “Ohana” indeed!
Read more of Clay’s story in her blog article: Ethnography: A New Frontier in Retinoblastoma Research, which includes a discussion session from the One Rb World 2021 conference.
Find Your Ohana at One Rb World in Hawaii
One Rb World brings deep connections and personal growth. Join in person to help build a supportive network of people who understand your unique challenges and triumphs, and share your desire to help shape effective lifelong care.
Clay explains more in the brife video below.
Clinician Perspective
Pernille Axél Gregersen, MD, PhD,
Clinical Geneticist, Department of Clinical Genetics and Centre for Rare Diseases, Aarhus University Hospital, Denmark
The One Rb World meeting is an absolutely unique opportunity to share knowledge and expertise in all fields of retinoblastoma – clinical management, research, family support, survivorship care, etc. – you name it. The multidisciplinary approach and collaboration with retinoblastoma survivors and families is invaluable and makes an exceptional platform for working with retinoblastoma.
As a clinical geneticist and part of the Danish Retinoblastoma Team at Aarhus University Hospital in Denmark, I have learned a great deal from previous One RB World meetings. Especially the patient-oriented sessions have given me valuable insight in living with retinoblastoma and the need for retinoblastoma survivorship clinics.
I am very excited to attend the next meeting in Honolulu in October 2024, and I am very humbled and honored to be invited as a speaker and participant in the panel discussion about Rb genetics. I also look forward to the sessions about Child Life support in retinoblastoma; and organization of, and management in survivorship clinics.
I am very grateful for and humbled to be part of the One Rb World community, a global family supporting work in all fields of retinoblastoma.
Stephen Haddad BCO
Board Certified Ocularist; Director, Ocular Prosthetics, Inc, Los Angeles.USA.
“One Rb World meetings, where the knowledge of diverse professionals, the hope of families and survivors, and the sincere determination of all, come together. A multi-faceted approach making a real difference. Each person and perspective adds brilliance to our shared mission, creating a wellspring of profound motivation to elevate my service.”
Vera Adobea Essuman and Lorna Awo Renner
Paediatric Ophthalmologist and Paediatric Oncologist. Korle Bu Teaching Hospital, Accra, Ghana.
“Ghana, a small, populous country in West Africa, records an average of about 60 new cases of retinoblastoma annually. Overall Survival is less than 50% with a high rate of treatment abandonment.
Before 2016, enucleation with or without systemic chemotherapy and external beam radiation were the mainstay of management. There was no comprehensive treatment center, no national guidelines / programme for retinoblastoma, and funding was a big challenge. We decided to find a lasting solution. However, the challenge was how to go about it!
The One Rb World 2017 conference in Washington DC initiated the journey! We both attended the conference, which re-enforced our conviction for a National Strategy, and provided the platform for NETWORKING.
With the help of partners we met at the conference, and others, Ghana has made significant strides in improving and expanding retinoblastoma early detection, treatment options, training health workers at different levels of care, inclusion of childhood eye cancer under National Health Insurance Scheme, and drafting a National Strategy for Retinoblastoma.
These modest national achievements took inspiration from our One Rb World 2017 experience, and we are grateful to all our partners!”
Find Your Ohana at One Rb World in Hawaii
The conference presents clinicians a rare opportunity to directly learn from and collaborate with diverse patient families and survivors, enhancing your ability to provide empathetic and effective care. Join in-person for richer, more engaging interactions that are critical for professional growth and the best patient outcomes.
Vera and Lorna at One Rb World 2017.
Dr. Helen Dimaras
Director of Global Eye Health Research, The Hospital for Sick Children, Toronto, World Eye Cancer Hope Canada Team
“Hosting One Rb World in Ottawa in 2020 provided the opportunity to showcase the strong patient engagement in research taking place in Canada, even though the pandemic forced the conference to proceed online. The conference sessions were co-chaired by patient and non-patient experts, and lived experience was showcased alongside scientific discoveries – in every panel – to provide a comprehensive overview of retinoblastoma.
Virtual networking sessions saw ophthalmologists in Nigeria speaking with survivors in Australia; mothers from Kenya speaking with survivors in Canada.
The children’s program took center stage as a featured part of the program, rather than complementary, allowing adult participants to catch a glimpse of child life in action.
The positive outcome of the virtual event was that it might just have been our most global conference ever, with participation of more than 200 people from 40 countries.”
Find Your Ohana at One Rb World in Hawaii
Research is deeply integrated with patient experiences at One Rb World, fostering a rich environment for both scientific and personal growth. Joining in person offers researchers unparalleled access to a wealth of real-world insights and collaborative opportunities that can significantly inform and enhance your work.
Screenshot of panelists during genetics session at One Rb Word 2020.
Advocate Perspective
Kristen Small
Friend to a Survivor, and WE C Hope USA Board Member
“Having been best friends with an Rb survivor since we were five years old, I’ve been around this disease for many years. I’ve seen first-hand the trauma that radiation treatment can wreak on the body, and watched my friend undergo countless reconstructive surgeries to address this and a second primary cancer.
I joined the board of WE C Hope USA to facilitate education and awareness for survivors and families.
My first One Rb World conference opened my eyes to the tremedous value that can come from bringing medical professionals, parents, survivors and patients together to share personal stories and research as well as advice and education on care and survivorship.
I’m so thankful that we were able to continue to connect with families, survivors and medical professionals throughout the pandemic using a virtual platform. But more than anything, I’m truly inspired to continue this forward momentum to improve the lives and outcomes for everyone impacted by Rb.”
Find Your Ohana at One Rb World in Hawaii
We are all motivated in some way by a personal connection to the challenges of retinoblastoma. One Rb World is a powerful platform for all of us to share knowledge, understanding and hope, inspire action, and strengthen the global community fighting this cancer, often for life.
Kristen (right) with WE C Hooe USA President Marissa D. Gonzalez, celebrating the One Rb World 2017 meeting in Washington D.C.
Join Us in Hawaii for One Rb World 2024
We invite you to join us at One Rb World 2024 in Honolulu; the gathering of our global family, dedicated to transforming the landscape of retinoblastoma care.
Virtual registration is now open for everyone to access the livestream program, wherever you are in the world. However, by joining us in person, you become a truly active participant in this vibrant conference. You’ll experience the powerful positive high that comes from being together in one place, at one time, united in one common purpose.
Register today to be part of this unique experience where every person, every story, and every insight adds to our collective strength. Together, we nurture ohana, and hand in hand we reshape care and cure for all in our global retinoblastoma family.
See you in Hawaii!
Hear From More Participants
About the Author
Abby White’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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