Volunteers Change Retinoblastoma Care: Family Days and One Rb World


Monday January 2, 2023


Retinoblastoma is a rare childhood cancer with unique family and lifelong impacts.  Events that bring our community together are vital for mutual support and collaboration to advance care.  They happen thanks to dedicated volunteers.  In part 1 of this 2-part post, we focus on Family Days and the One Rb World conference, planned and hosted entirely by volunteers.


Skip to part 2: You Can Help Change Retinoblastoma Care: Volunteer with WE C Hope


A permanent gazebo provides shade over a seating area surrounded by grass. Beneath the canopy, people are sitting, standing, eating, and talking.

Some of the 80 participants at our 2022 Southern California Rb Family Day, enjoying a picnic lunch and relaxed conversation.

What Are Retinoblastoma Family Events?

Family Days

In 2018, WE C Hope USA hosted the first Southern California Family Day in Long Beach.  Our goal was to bring families and survivors together in a relaxed, fun environment, to connect our community and create local mutual support.

We began with California for several reasons – it is one of the most populous states, and also home to three of our board members.  Kristen Small and Lisa Hester have been active in helping each year alongside our president, Marissa D. Gonzalez, who is also a professional event planner.

Families and survivors agree that California Family Day is “A Day Well Spent”, and the event has continued annually.  In 2020 and 2021, events were held online due to the pandemic, with some families joining from out-of-state.

This year, we hosted the fifth annual California Family Day – welcoming 80 people to a wonderful picnic party in Los Alamitos.  Ultimately, we aim to bring local support thorough Family Days to our retinoblastoma community across the USA.  We also hope to incorporate learning and support opportunities like child life sessions for the kids, and relevant speakers and facilitators requested by parents and adult survivors.

A family gathers around a picnic table for this photo. Some are sitting, some standing, all smiling. Several people are wearing childhood cancer awareness gold ribbons and t-shirts. One girl’s t-shirt reads “I am a fighter; childhood cancer awareness”. The stick part of the letter H in “fighter” is replaced by a gold ribbon. ¬¬¬¬¬¬Across the table, a young child’s t-shirt bears another gold ribbon, and the words “for my sister”. A woman stands behind wearing a t-shirt with a big gold ribbon printed over a repeated series of words in various fonts – the words include “fighter, warrior, brave, believe, courage, hope, love”.

80 family members and survivors ttended our 2022 Southern California Rb Family Day, a fun and relaxing picnic party in glorious fall sunshine.

Family Weekends

We are mindful that our southern California community has benefits from Family Days for five years, as we learn and develop a process for planning and hosting.  We have been keen to expand the same support across the country.

This year, with generous funding from Marissa’s 30th Cancerversary Fundraiser, we launched three new events in the Midwest, Texas, and the Mid-Atlantic.  All three were planned as 3-day weekends, creating more time for families and survivors to meet and relax with one another, and for our team to get to know the local retinoblastoma community.

Our Midwest event took place in Chicago in July, and we gathered in Austin for our Texas weekend in early December.  We originally planned to host our Mid-Atlantic weekend in late October.  However, we listened to feedback from families who wanted to attend but found the event clashed with pre-Halloween, Homecoming, and other fall weekend activities.  So, we rescheduled the event to March 2023 – the Mid-Atlantic event in the Washington D.C. area is now open for registration.

Each event included:

  • A welcome dinner on Friday evening
  • A convivial shared breakfast on Saturday and Sunday.
  • A daytime outing on Saturday.
  • A fun Saturday evening activity and special group dinner.
  • A Sunday morning activity.
  • Lunch together on Sunday before saying goodbye.

Single day events are much easier and more affordable to plan and host, increasing our potential to host more regional events and reach more people.  However, the weekend model is more attractive to families and survivors who travel significant distances to attend.  Wherever possible, we aim to plan weekend events in regions where we have not previously hosted a gathering.

Image: A group of people gathered under a tree are smiling at the camera. On the left, Melinda wears a blue top. In the middle, Marissa wears a One Retinoblastoma World t-shirt and holds a white cane. To the right of the frame, Clayonia holds Camilla and waves at the camera. Max stands in front of them, holding his white cane. Behind them, a bright blue sky sweeps over rich foliage and red-roofed buildings.

Current patients, child and adult survivors, and their families enjoyed our 2022 Midwest Rb Family Weekend in Chicago.

Some feedback from Family Day participants:

 “You are never prepared for this diagnosis, and knowing there is a community is so important.” 

“I loved gaining strength from hearing the journey others have taken, meeting teenagers who have walked through these challenges and aren’t afraid to live life to the fullest.” 


“It has been fantastic to meet other Rb families and share information.”
 


“Seeing our children running around, making new friends brought such joy. Their simply being with other families for whom this crazy life of EUAs, chemo and constant travel to and from hospital is normal.”


“I am having So Much Fun!” (child Rb survivor) 


“It was so nice being able to talk to other families, and just the overall understanding of each other’s situations. I really hope Freya can have more experiences like this.”
 


“I believe we accomplished something very special as a collective group. We created an environment where our experiences were shared, valued, and understood.”


“Even the two years this event was held virtually created an opportunity to connect with other families.”
 

Children and adults stand inside and around the mouth of a shark, framed by its huge teeth.

Most of our 2022 Texas Rb Family Weekend group, including five Rb survivors, at the Austin Aquarium. It’s always better to be with others in the jaws of a shark!

One Retinoblastoma World

One Rb World was founded in 2012, and remains the only regular global meeting focused entirely on retinoblastoma.  The event unites medical professionals, researchers, parents, survivors and children to learn from one another and address some of the biggest priorities in immediate and lifelong care.

This interactive meeting takes place alongside the world congress of the International Society of Paediatric Oncology, which changes location each year.  The SIOP world congress is the largest global meeting focused on childhood cancer care and survivorship, attracting more than 2,500 medical professionals, scientists, and parent and survivor advocates from all corners of the world.

Parents and survivors have been active participants since the first two-day meeting in 2012, where it became clear they also needed a separate forum to share their experiences, ask questions, and expand their knowledge.  In 2014, a Family Day took place immediately before the two-day medical meeting in Toronto.  The day included educational talks, panel sessions answering attendee questions, and small group discussions.  In 2017, WE C Hope added several social activities to the Family Day – an afternoon bus tour of Washington D.C., and an evening drinks reception.

Children have also participated in all meetings.  During One Rb World 2012, retinoblastoma survivors Stephanie Agyrakis and Jana Torkar, both primary school teachers, provided a super children’s program at our venue in London, England.  In 2014 and 2017, WE C Hope’s Child Life Specialist, Morgan Livingstone, led a children’s program alongside the three-day events, offering a wide range of activities to support children’s coping as patients and siblings.

During our virtual meetings in 2020 and 2021, child life sessions were incorporated into each day of the program.  They ensured children continued to receive this support, and invited medical professionals and parents to understand a little more about how child life helps children through their cancer experience.

Although WE C Hope has planned and hosted four of the six conferences, One Rb World belongs to the global retinoblastoma community.  We encourage the local retinoblastoma community to plan and host events in countries where we do not have a presence, either independently, or in collaboration with WE C Hope.

Meetings to date have been held in England, Canada, Ireland, the USA, and two virtual meetings.  Sadly, we had no meeting to coincide with SIOP in 2013 (Hong Kong), 2015 (South Africa), 2018 (Japan), 2019 (France), or 2022 (Spain) due to the cost and/or logistics of organizing an event without local knowledge and action.

Some feedback from One Rb World participants:

“A wonderful line up of lovely people, the spirit of collaboration and family was evident throughout”

“It was an amazing experience and I’ve learnt so much and am feelin so inspired!”

“One Rb World helps prepare me to better support and advocate for my son.”

“I love hearing about experiences…that some of the random things I struggle with…are shared by other people.”

“This conference unites patients and doctors in the fight for a better way and better therapies for this disease. The unity between patient directed needs and doctor directed solutions is unprecedented.”

“We are so grateful to be part of an international platform where we can learn and share with experts and families from around the world.”

“Before One Rb World I had never known anyone with retinoblastoma…Spending time with fellow adult survivors helped me know that I was not alone as an Rb survivor.” 

“One Rb World has changed me and my approach to retinoblastoma. I am proud to have advocated for child life intervention in our unit, and completed a PhD on Screening for Retinoblastoma and Delayed Diagnosis. Who would have thought that One Rb World would open my eyes so widely and lead me on this journey of self-discovery and knowledge?”

“This meeting has made me a better physician. It has made me think of things in a new way, and I will bring a new skillset back to my patients.”

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.

Most of the in-person participants at One Rb World 2017 in Washington D.C. Over 130 people also joined via the global livestream.

Why Do We Need Community Events?

Rarity

Retinoblastoma is a rare cancer.  Affected families survivors, and specialist treatment teams are scattered around the world.   Organized opportunities to connect are vital to improve care and support.  

Retinoblastoma-Specific Support

Retinoblastoma is a unique cancer with significant physical and psychological impacts for children, survivors and their families.  Regional and national Family Days offer space to relax and refresh with others who understand the experience, outside the hospital environment. 

 

Participants can share their stories and support one another, and take part in activities tailored to their specific needs.  Children can play with other children of their age who have eye cancer or the sibling perspective, and know they are not alone.  For some survivors and parents, our Family Days have been the first time they ever met another person affected by retinoblastoma.  

Knowledge Transfer

When diagnosed early and treated effectively, retinoblastoma is highly curable.  No child should die, or suffer avoidable blindness, from this eye cancer.

Retinoblastoma sessions are included in the programs of various medical meetings, including the International Society of Paediatric Oncology, International Society of Ocular Oncology, and International Society of Genetic Eye Disease and Retinoblastoma.  However, none consistently address care of the whole child and family, early detection and barriers to care, or survivor experiences and needs.

Collaborative research, clinical care, and family support to benefit the majority of children and survivors can only be developed through inclusive meetings with a holistic, real-world focus.  One Rb World combines lived experience with research and clinical expertise to tackle some of the biggest challenges in retinoblastoma.

The program encourages collaboration and networking, focused on understanding the experience and needs of the child, family, survivors, and professionals providing care.  This builds a solid foundation to guide and support relevant international multi-centre research.  This collaboration will ultimately expand knowledge and scientific evidence, improving survival, vision outcomes, psychosocial support and lifelong care for all.

The Child Life and Family Day programs directly meet practical needs of young children, families, and survivors.  Young patients and their siblings receive immediate support and gain knowledge and healthy coping skills through purposeful play.  Parents and survivors have a unique opportunity to learn from gathered world experts in retinoblastoma and survivorship, to ask questions, support one another, and network with attendees from across the host country and around the globe.

Lisa, Marissa, and Kristen smile at the camera. They all wear matching One Retinoblastoma World T-shirts.

WE C Hope USA board members, Lisa, Marissa, and Kristen at our 2022 Southern California Family Day.

Who Organizes Our Current Events?

All our Family Days since 2017 have been organized and hosted by WE C Hope USA President and bilateral retinoblastoma survivor, Marissa D. Gonzalez, together with 1-2 other board members.

Marissa also led the planning and hosting of One Rb World 2017 and 2021, and is now beginning to plan the 2024 meeting in Hawaii.  She worked with a small team in Canada to jointly plan and host One Rb World 2020, and will support our Canadian friends again as they plan and host One Rb World 2023 in Ottawa.

This small and dedicated team has created and hosted nine wonderful Family Days and weekends, and three One Rb World meetings since 2017, through some very challenging personal and practical circumstances.  While each individual event has been a great success, the small team means we are limited in what we can provide and how many people we can reach across the USA.

When only one or two people are doing most of the organizing, there is little scope to share and delegate tasks.  This can become very time-consuming and exhausting for the individual, especially when organizers are located far from the event city.

How Can I Help?

Read part 2 of this article, focused on the many ways volunteers can support retinoblastoma community events; the benefits for volunteers, WE C Hope, and the people we support; upcoming events; and how you can help.

You Can Help Change Retinoblastoma Care: Volunteer with WE C Hope

Medical play with a special puppet

Medical play during the child life program at One Rb World 2017.  Retinoblastoma medical puppet Kamau was custom designed with a removable prosthetic eye.

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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