Retinoblastoma Family Days: Building Connection, Camaraderie, and Hope
Monday May 26, 2025
When retinoblastoma changes everything, connection and understanding are vital. Family Days provide a soothing space for families and survivors to gather, share, and heal together. WE C Hope USA President, Marissa Gonzalez, and our blog curator, Abby White, explore how these special events foster community, joy, and hope across the retinoblastoma journey.
Our city sightseeing tour visited the White House, during our 2023 Mid-Atlantic Rb Family Weekend in Washington D.C.
When life is upended by childhood eye cancer and its effects, Retinoblastoma Family Days offer an invaluable opportunity for connection, peer support, and shared joy. World Eye Cancer Hope (WE C Hope) Family Days are specifically designed to support children diagnosed with Rb, survivors of all ages, and their families.
Retinoblastoma is a rare cancer; the journey through diagnosis, treatment, and survivorship can feel isolating and overwhelming. Family Days unite people who truly understand the unique challenges of living with and beyond childhood eye cancer.
Our events are a safe, nurturing space to connect, relax, share experiences, and have fun together. They are a lifeline for many families navigating the tough world of Rb treatment and lifelong effects, creating a sense of belonging, strength, and hope found nowhere else. The bonds of care and friendship often last far beyond the Family Day itself.
Family Days are a testament to the profound impact of connection and peer support. Below, we explore why Rb-specific events like these are so vital to our community, the unique elements of WE C Hope Family Days, and how these gatherings create strong, supportive Rb communities – within the USA and globally.
Rb survivor Evie and her mom, Lindsey, explain what Family Days mean to them.
Why Retinoblastoma-Specific Events Are Essential
Retinoblastoma profoundly impacts every aspect of life for patients and their families. The diagnosis is shocking for most, and the rarity of this cancer means many parents feel alone as their child enters treatment, with limited access to others who can empathize with their experiences. They often feel unsure of how to navigate complex medical decisions to best help their child, and many neglect their own wellbeing in the process.
Survivors face long-term physical and emotional effects, including vision impairment, cosmetic concerns, ongoing cancer risks for themselves and their children, and the psychological toll of having childhood cancer. Siblings also experience their own unique challenges that need special understanding, care and attention.
Many general childhood cancer family programs give excellent emotional, psychosocial, practical, and financial support. But they’re rarely able to address these nuanced needs of our community, leaving families and survivors feeling more isolated and unnecessarily distressed.
WE C Hope Family Days create a unique space where shared experiences forge deep understanding. No one has to explain – everyone “just gets it.”
Lisa Hester, our beloved WE C Hope board member who died in July 2024, and mother of survivor Elijah, wrote of her first Southern California Family Day in 2019:
“As the parent of a child with retinoblastoma, these were some of the most satisfying moments of the day for me. Meeting other families, hearing their unique stories, and just letting their words remind me that we aren’t alone in this journey. 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. I enjoyed sharing our own story and our experiences in hopes of encouraging other families.
Seeing our children running around, making new friends brought such joy. Their simply being with other families for whom this crazy life of EUA’s, chemo and constant travel to and from hospital is normal.
I believe we accomplished something very special as a collective group on Retinoblastoma Family Day. We created an environment where our experiences were shared, valued, and understood. We laughed! We ate and played! And we gave value to each unique journey that has been walked. To me, that was A Day Well Spent.”
The impact of this shared understanding is particularly profound for newly diagnosed families. At the 2022 Midwest Family Weekend, Emily, the mother of then six-month-old Freya, reflected:
“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.”
Family Days also help to address the broader emotional and social impacts of Rb. The trauma of this diagnosis can ripple through a family for generations, creating anxiety, uncertainty, and a degree of disconnection from the wider world. By coming together in a safe, supportive environment to meet, learn from one another, exchange advice, share coping strategies, and build lasting friendships, each person can find their voice, begin to heal, and renew their strength.
A group photo at Medieval Times during the 2022 Midwest Retinoblastoma Family Weekend in Chicago.
Connection and Peer Support: The Heart of Family Days
At their core, Family Days are all about connection. Each event offers a blend of structured activities, and free time for families and survivors to meet and get to know one another more deeply. To find comfort and understanding in the company of others who share a similar journey. To know they are not alone, and to nurture hope.
Sharing stories, coping strategies, and practical advice and resources brings invaluable emotional relief, and empowers everyone to be stronger leaders in their child’s care, or their own.
While we discourage guests from seeking or giving medical advice, parents have shared and gained valuable tips on many important topics. From navigating the healthcare system, support services, and lifelong care, to accessing educational supports and finding adaptive tools for children with vision loss.
A common misconception is that Family Days are primarily for children and their parents. In reality, these events are for everyone affected by retinoblastoma. Survivors of all ages, parents, siblings, and even extended family members find value in participating.
For survivors, especially adults who grew up without a support network, these events are a unique opportunity to connect with peers who share their lived experience – often for the first time in their life, At the Denver Family Weekend in 2024, bilateral survivor, Zaakirah Muhammad, from Oklahoma, expressed the profound impact of meeting other survivors:
“This is my first Rb weekend, and I love it. Being able to connect with the faces that I met on Facebook and hug it out in person feels amazing, and I also get to travel. I love the fact that you go to different cities, and we can get immersed into the city we are in.”
Survivors can talk with others who understand their experience of lifelong Rb implications and ongoing care challenges, employment, relationships, self-advocacy, and more. Talking about their hopes, frustrations, griefs, challenges, and successes gives them and parents fresh perspective on bright futures full of potential.
Peer support is equally impactful for young patients, survivors, and siblings. Meeting others who have faced similar challenges fosters normalcy and belonging around their eye cancer experience. The varied activities create joy and relaxed space for children and teens to talk about tricky topics, while older survivors often become role models and mentors. They offer encouragement, guidance, and motivation as children step into adolescence and beyond.
Partners, grandparents and other relatives, who often provide critical support, gain a deeper understanding of the Rb journey and their role in the family’s support system. They also give and gain valuable care as they connect with other caregivers.
Neal attended our 2022 Mid Atlantic Family Day with his wife, WE C Hope board member, Clayonia Colbert Dorsey. Reflecting on the weekend he said:
“The DC event was my first exposure to what my wife has gained since finding this strong group of retinoblastoma survivors and families. I was proud to be part of the weekend’s support network! I was able to witness how everyone came together – from all different backgrounds; I also sensed an overwhelming calm or peace, that these families and/or their survivors were no longer alone. The love and joy was truly genuine throughout our entire time together!”
The ripple effect extends far beyond the Family Day itself. Guests leave feeling supported and empowered, with a stronger sense of community, and more resources to navigate their ongoing journey.
Everyone had fun at the bowling lanes during 2022 Texas Rb Family Weekend in Austin. Parents and survivors bonded over a little friendly competition!
Activities Bring Connection and Joy
Family Days are filled with activities designed to spark joy, laughter, and meaningful connection. From the simple communion of a shared meal, to unique behind-the-scenes experiences. Every event incorporates a mix of fun, hands-on experiences and space for guests to bond, ensuring participants of all ages have an unforgettable time. Here’s a look back at some of the activities that have delighted families and survivors.
Annual Southern California Family Day
Our sunny gatherings have always offered playful activities for kids and adults. Our two most recent events – a picnic in the park attracting nearly 100 people each time, we had a bounce house, inflatable obstacle course, giant versions of Connect Four and Jenga, skee ball game, and swag bags for the kids. Face painting and a popcorn machine were also very popular. Lots to entertain the children as they played with old friends and made new ones, while parents relaxed and chatted under the warm California sun.
Midwest Family Weekend (Chicago, July 2022)
The weekend began with a relaxed conversation over a dinner of Chicago-style deep-dish pizza. We enjoyed a day at the Brookfield Zoo, where younger attendees held a corn snake named Omaha, examined pelts and antlers, and learned about animals through hands-on activities. The evening ended with a royal jousting experience at Medieval Times, where we all cheered on the brave knights, and children enjoyed waving glow sticks and glowing wands.
Texas Family Weekend (Austin, December 2022)
Our group went behind-the-scenes for a private tour of the Austin Aquarium, where we fed stingrays, petted a red-tailed boa constrictor, and loved learning about marine life. Later, we enjoyed a lively bowling session at Westgate Lanes, where children and adults competed (with bumpers for the younger ones) while savoring a hearty dinner from Slab BBQ, featuring brisket, pulled pork, and classic sides. A private tour of the Texas State Capitol wrapped up the weekend with a sense of history and pride.
Mid-Atlantic Family Weekend (Washington D.C., March 2023) (part 1 of 2)
Families enjoyed a private bus tour of our nation’s capital, stopping at iconic landmarks such as the Lincoln Memorial, the Martin Luther King Jr. Memorial, and the White House. The tour offered moments for sightseeing, reflection, and lots of group photos. Day two featured indoor rock climbing at the Movement Crystal City Rock Climbing Gym, where kids faced their fears, climbed walls of varying difficulty, and cheered one another on. A Kennedy Center tour capped off the weekend with educational insights and breath-taking views.
Denver Family Weekend (February 2024)
Activities kicked off with a Friday night welcome dinner featuring sliders, nachos, and glow-in-the-dark accessories for kids. On Saturday, we all visited the Wings Over the Rockies Air and Space Museum, where we explored historic aircraft and spacecraft in a hands-on private tour.
That evening, our group enjoyed lively drumming classes at Swallow Hill Music, culminating in a stirring sing-along and ukulele performance of “How Far I’ll Go” from Moana. We all loved the stress-relieving drumming and dancing session. On Sunday, the Denver Zoo hosted our group for a behind-the-scenes tour – highlights included a laughing kookaburra and an Argentinian boa constrictor.
During our Denver Rb Family Weekend, our Rb kiddos and their super-siblings drummed together in delight at Swallow Hill Music, led by music teacher Kristen.
Later, our young guests had a dance party as Rachel serenades them with a ukulele cover of “How Fall I’ll Go” from Disney’s Moana.
One Retinoblastoma World: A Unique Family Day Experience
While regional Family Days focus on building local communities, the Family Days at One Rb World conferences bring together a global community. They offer a unique mix of learning, fun, and global community-building.
The Family Day at One Rb World 2017 in Washington, D.C., included parent and survivor focused panel sessions, a bus tour of the city’s famous landmarks, and a networking social.
One Rb World 2024 in Hawaii took the Family Day to new heights as the event combined a pre-conference social day with formal Family Day programming.
All our conference attendees had the opportunity to join a fun private trolley tour of Honolulu, stopping for Hawaiian shave ice, and visiting iconic landmarks like Diamond Head Crater and the Halona Blowhole. This fabulous social day gave everyone space to recover from the long flight and bond in a relaxed setting before diving into the conference program the following day.
During the formal conference program, Family Day panel sessions provided valuable insight and knowledge for parents and survivors. An evening poolside social allowed families, survivors, medical professionals and researchers to deepen connections while enjoying fabulous traditional Hawaiian fare and musical entertainment.
Genevieve McCarthy, president of the Canadian Retinoblastoma Society, unilateral survivor from Toronto, and a panelist in Hawaii, reflected on the impact of these events:
“Having a sense of community has helped me feel understood and accepted. By sharing our personal stories, we inspire hope in others and foster a cycle of growth and healing, all while forming deep, lasting connections that enrich our lives.”
These global gatherings highlight the diverse experiences of our retinoblastoma community, while emphasizing our shared challenges and triumphs. We all leave with more knowledge, understanding, friendship, and solidarity.
Our joyful group stops at the Halona Blowhole during a private bus tour of Honolulu – a lively social event and networking opportunity for everyone attending the 2024 One Rb World conference in Hawaii.
Building a Stronger Retinoblastoma Community
Through a delightful blend of activities and relaxed networking, Family Days foster a sense of belonging and mutual support. They create a space where young patients, survivors, and their families can lean on, learn from, and support one another, share resources, and form lasting friendships. This sense of community helps everyone navigate the challenges of retinoblastoma with greater confidence and hope.
Ruben highlighted these key points when reflecting on SoCal Rb Family Day 2023, which he attended with his family, including nine-year-old bilateral Rb survivor, Bryce. He said:
“We really love this event because of the community that’s here. Everybody shares their stories, everybody has the same pain that we experienced, we all get to talk about it and meet new people.”.
Thinking globally, the connections we forge at One Rb World Family Days contribute to a more aware, more supportive global Rb community. They inspire ongoing action to help make our one retinoblastoma world a kinder, more hopeful place for every child, survivor, and family, no matter where they live in the world.
Families share picnic fun at the 5th Annual Southern California Rb Family Day.
Volunteers Create the Magic Behind the Scenes
Family Days wouldn’t be possible without the generosity and dedication of our volunteers who help plan and run these events, and the enthusiastic participation of families and survivors. Whether you’re interested in organizing an event or attending one, your involvement helps build a stronger, more connected community.
Volunteers play a vital role in ensuring every Family Day is a wonderful experience filled with memory-making moments. From planning logistics to organizing and leading activities, they help to create more opportunities for connection, care, and hope.
Esther Geller, aunt of an adult bilateral Rb survivor, reflects on her experience volunteering at One Rb World 2024 social events and the child life program:
“Volunteering at One Rb World in Hawaii was an incredible opportunity to witness first-hand the powerful connections that were formed between survivors, family members and medical professionals. As a retired nurse who spent years in pediatrics, it is heartwarming to see the retinoblastoma community coming together to offer support to one another and strengthen bonds among the challenges of a pediatric cancer diagnosis.”
Many volunteers bring their own experiences as survivors or family members, enriching our events with deeper empathy and insight. With the commitment, energy, and vision of our volunteers, Family Days will continue to grow and evolve, reaching more communities and changing lives across the USA and around the world.
If you’d like to help bring a Family Day to your US region, WE C Hope would love to hear from you. Whether you’re a survivor, parent, or community supporter, you can make a world of difference to families and survivors.
Please contact Marissa Gonzalez (marissa@wechope.org) to learn more. Together, we can create more events where every member of our extend Rb Family feels seen, supported, and celebrated.
Join the Journey
No one should have to face retinoblastoma alone. Every retinoblastoma Family Day is a transformative celebration of community, belonging, resilience, and hope. Through regional events and the unique global-focused Family Days at One Rb World conferences, WE C Hope continues to light the path for everyone affected by Rb.
On May 3rd, we hosted our first Northern California Family Day at the San Francisco Lighthouse for the Blind – and what a joyful gathering it was! Forty patients, survivors, and family members came together from across central and northern California to celebrate the power of community. Heartfelt connections, shared stories, and laughter filled the day as children played, parents bonded, and new friendships bloomed.
We were delighted to welcome author Paty Millan Montesinos, who generously gifted families with copies of her inspiring bilingual children’s book, I Love My Magical Eyepatch – a beautiful story of self-love and empowerment inspired by her son’s Coats disease journey. Families also loved visiting with cuddly pups and gained valuable resources from Guide Dogs for the Blind.
This wonderful day illustrated why Family Days matter so much – the hope, joy, and lasting memories created when our Rb community gathers in shared understanding. Look out for our full event recap coming in early August!
Scenes from our fabulous first Northern California Family Day.
We’re excited to host the 7th annual Southern California Family Day on Saturday, September 27 at Children’s Hospital Los Angeles – stay tuned to our social media for registration and more details in June.
We’re also busy preparing for the 8th One Rb World conference and its fabulous family-focused activities – we’ll be in San Antonio, Texas in September 2026.
As we look forward to these special events, we’re so thankful for the incredible community our Family Days are nurturing. Please join us on this journey of camaraderie and hope – because together, we are stronger.
Rb survivor Helena, 2022 Southern California Rb Family Day.
Rb Mom, Cuc Tran, 2024 Denver Rb Family Weekend.
DJ Burzon, 2023 Mid-Atlantic Rb Family Weekend.
Rb Survivor, Jeannie Balms, 2023 Southern California Rb Family Day.
About the Author
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, and was Event Chair for the One Retinoblastoma World Conference in 2017 and 2021. In her downtime, Marissa enjoys travelling and going to Disneyland.
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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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