Laulima: Many Hands, One Retinoblastoma World

Monday June 10, 2024

Laulima signifies the power of cooperation, teamwork and collective effort.  This Hawaiian concept of many hands striving together drives the One Rb World conference, taking place in Honolulu this October.  Members of our 2024 conference team explain how laulima inspires their work for this global community, united to advance retinoblastoma care for all.

A large, diverse group of people pose together in a conference room. Most are dressed in smart casual attire. Many are smiling and waving at the camera, and those in the centre are holding a large banner that reads "One Retinoblastoma World". A large world map features on the wall behind the group. At the front, two ladies sit close together holding a plush elephant with removable eye between them. The elephant is bedecked in red, white and blue flowers.

Many participants at One Rb World 2017 – our last in-person conference.

Embracing Laulima at One Retinoblastoma World

Laulima, the culture of many hands working together, lies at the heart of One Rb World.  This conference epitomizes the collaborative spirit we need to drive progress in lifelong retinoblastoma care.  It is a place where families, survivors, clinicians, researchers, and advocates converge, breaking down barriers and fostering unity in our shared purpose.

One Rb World nurtures deeper connections, effective collaborations, and lifelong friendships.  Though virtual registration opens the conference to the world, it is the in-person interactions at this unique event that truly build our global community.

Marissa D. Gonzalez, Rb Survivor, WE C Hope USA President and 2024 Event Chair, shares her journey from participant to planner:

“As Event Chair for the 2024 One Retinoblastoma World conference, I am excited by the challenge of planning my second in-person One Rb World meeting.  In 2016, I traveled from California to Dublin, Ireland, to attend my first One Retinoblastoma World conference.  I had already assumed responsibility for producing the following year’s event; since it was to take place in Washington D.C., the World Eye Cancer Hope USA team were well-placed to organize.

Dublin was where I first met Dr. Jesse L. Berry, despite living only an hour apart, and working for the same University.  I knew she was an Rb specialist whose career was on the rise, and she would be my scientific program chair for the 2017 conference, so I really hoped we would click!  Within about three minutes of meeting, we both knew we were destined to not only be colleagues, but also lifelong friends.

Dr. Berry and I enjoyed the planning process for D.C., and I personally loved that she kept Dr. A. Linn Murphree in the loop about all our successes.  Dr. Murphree established the Retinoblastoma Program at CHLA, and pioneered global Rb care in many ways, including at the first One Rb World meeting in London, where he spoke about the impact of Rb on family relationships.  Dr. Berry became his last fellow.  When he retired, she enthusiastically took up the baton, supporting the growth of One Rb World.

Marissa sits with Linn and Jesse close together on a couch. They are all smiling.

Marissa with Jesse Berry MD and A. Linn Murphree MD.

For me, it was important to offer the conference attendees a polished, professional event, and also bring a level of thought and care to the survivors, patients and families.  A unique aspect of One Rb World is that all attendees meet on a level playing field.  Doctors are referred to by their first name, just as a child or parent is.

I watched some adult survivors and parents struggle with this concept since they usually have limited time with their doctor, and a laundry list of questions.  As the conference evolved, it was evident that people became more comfortable, and by the end, they were chatting with doctors like old friends.  This strengthened both the adult survivor and the parent relationship, and confidence when speaking to health care professionals, from ocularists to oncologists to geneticists.

I have heard from many people that this confidence and newfound ability to interact with medical professionals has continued long past the conference.

In 2020, I was honored to assist WE C Hope Canada, the Canadian Rb Society and the Canadian Rb Research Advisory Board in planning the first virtual One Rb World conference.  I am so thankful that our team to the north organized a wonderful event in the early months of the pandemic.

2021 brought the virtual conference back to the USA, and another opportunity for Dr. Berry and I to collaborate, this time with Dr. Sandra E.  Staffieri from Melbourne, Australia.  The three of us may have struggled with time zones, but we worked together like champs to shine a light on Rb in Oceania and around the world.

2024 brings the return of the in-person conference in Honolulu, Hawaii, and also the 2021 planning trio, with one addition.  Dr. Berry and I met with Dr. Maura Di Nicola of Bascom Palmer Eye Institute in Miami, Florida, while we were all attending the International Society of Ocular Oncology Africa conference in Kenya last summer.  We were thrilled she agreed to join us on the scientific committee for Hawaii.

Witnessing the growth of the conference through the years, and seeing a 25% uptick in in-person registrations for Hawaii from our 2017 event is validation that this conference has a global impact.”

Two women and two men pose together in a conference room. They are all dressed in professional attire, and each wears a gold One Rb World lanyard. One of the men wears a gold tie for childhood cancer.

Marissa Gonzalez talks with Rb Center of Houston program leaders Murali Chintagumpala, M.D., pediatric oncology, Texas Children’s Hospital; Patricia Chevez-Barrios, M.D. ophthalmic pathology, Houston Methodist Hospital; and Dan Gombos MD, ophthalmology, MD Anderson Cancer Center.  One Rb World 2017.

Networking Opportunities

The spontaneous networking opportunities of an in-person conference are vital for forming collaborative relationships and support networks.  As Marissa highlights, this is important in different ways for all researchers, professionals, families, and survivors throughout our One Retinoblastoma World community.

Networking is also vital to planning, funding, and staging One Rb World as a meeting place and collaborative forum.  This can pose practical challenges for Rb survivors like Marissa who serve our community and live with sight loss.

Marissa and our entire team are thankful for the support of her Personal Assistant, Alex Paulos, as they network to organize. fundraise for, and produce the conference. Marissa explains:

“The constantly evolving technology in day-to-day life alone can be exhausting for someone with significant vision loss. Adaptive technology is wonderful, but does not always read every word or section of an app, website, or email. Having a personal assistant who is able to help navigate the challenges of technology is a blessing that reduces stress and allows me to increase my productivity. For me, this is a necessity and a very important personal investment, and greatly benefits all that I do for World Eye Cancer Hope.”

Alex Paulos, Marissa’s Personal Assistant, avidly supports our networking for the conference, and shares her enthusiasm:

“Helping to plan the One Rb World Conference has opened my eyes even wider to the world of retinoblastoma and everyone working hard to help children affected by it.  It is an amazing feeling to be a part of something that is so vital for patients, families, and survivors, and I can’t wait to meet everyone in Hawaii!”

A smiling woman and a young child, both retinoblastoma survivors, stand in front of a curved solid wall next to a vast fountain at the World War II Memorial in Washington D.C. The woman holds the child on her hip with her left arm, and an Elli plush toy in her right hand. The child’s white t-shirt says “One Retinoblastoma World”. The fountain is circled by water jets and a row of white pillars, under a clear blue sky.

Marissa and fellow survivor, Lucia, share a moment of reflection and joy at the World War II Memorial in Washington D.C., during the private Family Day tour in 2017.

The Power of Personal Connection

Being physically present at One Rb World enables participants to form deeper, more meaningful connections.  This is particularly vital for everyone managing the psychosocial impacts of retinoblastoma – including medical professionals.  The sense of belonging and community, the opportunity to connect fully with others who share similar experiences is invaluable for emotional support and shared learning.

Many aspects of the conference, such as breakout sessions, child life program, and social activities, can only be experienced in person.  These parts of the program offer unique insights and opportunities for direct engagement that cannot be delivered virtually.

Lori Banos, Rb Mom and member of WE C Hope USA’s Board of Directors, shares her insights:

“I am so looking forward to One Retinoblastoma World 2024 in Hawaii.  A Retinoblastoma diagnosis can be extremely isolating for the entire family and our experience was no exception.  When my daughter was diagnosed with bilateral retinoblastoma, her pediatrician and local ophthalmologist had never seen another case of Rb.  My daughter was the only child in her school district with Retinoblastoma, a prosthetic eye, and a vision impairment.

One Rb World offers a chance for us all to finally be with others who share a similar journey.  Instead of being one of one, we are one of many.  We belong to a community of survivors, family members, friends, doctors, and ocularists.

Following One Rb World in Washington, DC, I was even more motivated to make these connections and lead the charge to begin hosting WE C Hope’s Family Weekends throughout the US to extend these opportunities for connection throughout the year.  The collaboration with medical professionals is another important and unique part of this event and one of the many reasons attending One Rb World is so beneficial.

The amazing survivors, family members and medical professionals I have had the pleasure of meeting and working with to plan this extraordinary event will stay with me for a lifetime, and I look forward to us all coming together as one Rb world.”

A large group of people, ranging in age from very young children to older adults stand and sit together on the steps in front of the Jefferson Memorial in Washington D.C. Some are wearing red, white and blue floral garlands.

Families, survivors, and professionals gather at the Jefferson Memorial in Washington D.C. during a fun private bus tour of the city as part of the One Rb World 2017 Family Day program.  The program included a morning session of presentations, panels, and open-floor discussions.

Two smiling women pose on the steps of the Jefferson Memorial in Washington, D.C. Both are dressed in stylish casual wear, and wear One Rb World lanyards. They are clearly enjoying their visit.

Dr. Sandra Staffieri and Ligia Fu MD 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.

Access to Experts

One Rb World offers unparalleled access to leading retinoblastoma specialists and researchers, and parent and survivor advocates.  Joining in-person creates a unique learning arena rich in exchange of knowledge and experience, and vast opportunities for individual discussions, clarification, and personalized advice that are not possible with virtual access.

Sandra Staffieri, Rb Care Coordinator at the Royal Children’s Hospital, Melbourne, Australia, reflects on her experiences:

“Since the inaugural conference in London, 2012, it has been my distinct privilege to have attended every One Retinoblastoma World Conference.  As an orthoptist, I never expected to learn so much from parents and survivors and apply those learnings to my everyday practice and care of those directly or indirectly affected with retinoblastoma.  I would have to say: “I didn’t know what I didn’t know”.  I am certain I will continue to learn more this year too!

In the 12 years since the first conference, I have gone from being a participant to presenter to convenor (One Rb World 2021, One Rb World 2024).

I look forward very much to welcoming participants from around the world, from all walks of life, who have been touched by retinoblastoma in some way or other.  As part of the Scientific Program committee, assembling a broad collective of voices: survivors, parents and clinicians has been an exciting process as their stories, experiences and knowledge will be shared, barriers and challenges around timely diagnosis and treatment discussed, and solutions of hope identified.

After two successful virtual conferences, I am so very excited to come together face to face in Hawaii as nothing compares to the value of human connection.  For some, in person attendance will not be possible, but that is the beauty of this meeting where we can bring the conference – and hope – to you wherever you are in the world.”

A diverse group of people sit around a table talking. The table is filled with papers and classes of water, and more people are seen working together around tables in the background..

A small group breakout session at One Rb World 2017 in Washington D.C.

Learning and Progress

Immersive participation in One Rb World encourages everyone to explore together how retinoblastoma affects patients, families and survivors throughout life.  This comprehensive learning is crucial to advance holistic lifelong care.

Maura Di Nicola, Ocular Oncologist at Bascom Palmer Eye Institute, Miami, USA, speaks to the importance of this approach:

“My motivation to be involved with One Rb World stems from my passion for retinoblastoma and a profound belief in the power of collaborative effort for this condition.  Having seen firsthand it impact on patients and their families, I am driven to contribute to a platform that brings together diverse voices from the global community to share knowledge, support, and hope.

In my role on the scientific program committee, I have gotten to know and work closely with amazing people.  Jesse Berry is a leader in the field who I have known and admired for a long time, Marissa Gonzalez is simply a true inspiration, and I am amazed by Sandra Staffieri’s work.

I am gaining a unique perspective on the intricacies of organizing a conference that addresses both scientific and human aspects of retinoblastoma.  It is immensely rewarding to be part of a team dedicated to creating a comprehensive and impactful program that can make a real difference in the lives of those affected.

I am excited about the opportunity to learn from leading experts this October, and to witness the resilience and courage of survivors and their families.  I look forward to the potential to foster new connections and collaborations among researchers, clinicians, patients, and advocates.

Most importantly, I am eager to witness the strength and solidarity of our community as we come together to share experiences, support one another, and work towards a brighter future for all those touched by retinoblastoma.”

Child Life Program

The One Rb World child life program offers personalized support to children diagnosed with retinoblastoma, their siblings, and children of adult survivors.  A haven where they can safely explore and understand their experiences, and build emotional resilience and mutual support.

Morgan Livingstone, Child Life Specialist and program leader reflects on One Rb World and what awaits for kids in Hawaii:

The Healing Locale

Hawaii’s serene tropical environment offers many therapeutic benefits, providing mental restoration and well-being.  The traditional spirit of Aloha adds a unique dimension to this year’s conference, creating a sense of retreat and holistic healing.

Marissa captures the essence of this healing environment:

“I eagerly anticipate welcoming medical professionals, scientists, families, and survivors to One Rb World in Hawaii this October, and I cannot stress enough how uplifting and life-altering this event can be for all who participate in-person.”

A girl and boy sit between their father and mother on a beautiful calm beach, facing the clear blue sky and tropical ocean where some people are swimming and playing. The mother and teen or preteen daughter are wearing bikinis. The father and son are wearing shorts and t-shirts. The photo is taken from behind the family.

Family time on Waikiki Beach.

Teamwork Makes the Dream Work – Join Us in Hawaii!

The 7th One Retinoblastoma World conference is much more than a three-day event.  It’s a movement powered by many hands working together to bring hope and change.  We invite you to join us in Honolulu, October 15-17 and be part of this extraordinary gathering.  Whether you are a survivor, family member, medical professional, or other advocate, your presence matters to the spirit of laulima.

By participating in-person, you will:

  • Connect more deeply with others for greater understanding, support, and shared learning
  • Benefit from real-time, personalized discussions with experts.
  • Have spontaneous networking opportunities.
  • Give your children specialized support through the child life program.
  • Explore a diverse range of topics to build holistic care.
  • Engage fully in all conference activities.
  • Experience the program at the optimal time.
  • Enjoy the healing environment of our Pacific location.

Together, we create a brighter future for all in our global community.  We can’t wait to greet you in Honolulu!

About the Authors

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. She was Event Chair for the One Retinoblastoma World Conference in 2017 and 2021, and also for this year’s conference in Hawaii. In her downtime, Marissa enjoys travelling and going to Disneyland.  Read Marissa’s story on our blog:

A Milestone Anniversary: Celebrating 30 Years Being Cancer Free

Living With Vision Loss: Challenges and Changing Perspectives

Marissa D. Gonzalez

Lori Baños lives in Iowa with her husband, Juan. She is a founding and active board member of World Eye Cancer Hope and is the parent of an adult survivor of bilateral Retinoblastoma. On October 24, 2010, she created the Facebook group, Rb Moms, a place of support for mothers of children with retinoblastoma.

Lori is a dedicated itinerant Teacher of Students with Visual Impairments (TVI) and Certified Orientation and Mobility Specialist. She brings many years of experience in the field to children and families in our retinoblastoma community.

Read from Lori on our blog: 10 Things Parents Want You to Know About Retinoblastoma

Lori Banos

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.

As a Research Fellow and Clinical Orthoptist at the Centre for Eye Research Australia, Sandra completed her PhD on delayed diagnosis of retinoblastoma. Her prime focus was to develop and evaluate an information pamphlet for new parents to raise awareness of the important signs of childhood eye disease – particularly strabismus and leukocoria – in the hope this could lead to earlier diagnosis.

Read more about Sandra on our blog:

My life as a Retinoblastoma Care Co-ordinator

One Retinoblastoma World, A New Realm of Discovery

Maura Di Nicola, MD is an Assistant Professor of Clinical Ophthalmology at the Bascom Palmer Eye Institute in Miami, specializing in adult and pediatric ocular oncology, uveitis, and retinal diseases. She received her medical degree at Vita-Salute San Raffaele University in Milan, and did her ophthalmology residency at the University of Milan, Italy. She completed fellowships in ocular oncology at Wills Eye Hospital and the University of Cincinnati, and in uveitis and medical retina at the University of Illinois in Chicago.

Dr. Di Nicola is a member of the American Academy of Ophthalmology, International Society of Ocular Oncology, Association for Research in Vision and Ophthalmology, and Vit-Buckle Society. She serves on the editorial board of the American Journal of Ophthalmology International. Her research interests include diagnosis and treatment of adult and pediatric tumors, ocular inflammatory diseases, and retinal diseases, with a focus on multimodal imaging.

Maura di Nicola

Morgan Livingstone is a Certified Child Life Specialist and Certified Infant Massage Instructor/Trainer. She is passionate about improved child life and psychosocial supports for children and families affected by retinoblastoma.

As the Child Life Officer of WE C Hope, Morgan contributes to the website’s Child Life sections, and speaks globally about child life supports for children with retinoblastoma. She provides enriched multi-day child life programming for children of all ages at One Rb World events.

Morgan also writes and creates resources for children and adults, and participates in child life research studies. She won the inaugural Innovation Grant at Operation Smile for developing an APP that uses Virtual Reality to prepare children receiving cleft lip and palate surgery.

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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