Our Retinoblastoma Community Shines in the Golden City
Monday August 4, 2025
Childhood eye cancer and its lifelong impacts can overwhelm and isolate – connecting with others who understand is vital for healing. On May 3rd, 2025, 40 young patients, survivors, families and friends gathered to celebrate and support the amazing Rb community in Northern California. Bethany Folks, WE C Hope USA Executive Assistant and Event Volunteer, reflects on a wonderful afternoon with Rb families in the Bay Area.
From left to right, WE C Hope USA Board Members Lori Baños, Marissa Gonzalez, and Melissa Mills pose in their matching Rb Family Day shirts next to WE C Hope’s banner.
On the first Saturday of May 2025, WE C Hope held their first-ever Northern California Retinoblastoma Family Day in San Francisco! This incredible event brought together 40 Rb patients, survivors, family members, friends, and allies from across the state for an afternoon of presentations, resource sharing, child life programming, and community building.
Our group gathered on the top floor of San Francisco’s LightHouse for the Blind and Visually Impaired. The large, bright space was set up with tables and chairs, a children’s play area, and program display tables featuring the LightHouse’s Little Learners program, San Rafael’s chapter of Guide Dogs for the Blind, and upcoming author, Paty Millán Montesinos.
Our children’s section was complete with donated toys, coloring books, stickers, and even special braille books from Little Learners, all laid out on two handcrafted quilts specially made and donated to WE C Hope by an Rb Aunt. A third of her beautiful quilts was featured at the WE C Hope table as the grand prize of our 2025 World Rb Week raffle drawing, along with other WE C Hope swag.
The event’s table centerpieces featured WE C Hope merchandise such as pens and hand sanitizer, stickers from partner organization Kids Kicking Cancer TX, and WE C Hope’s survivor awareness postcards. All take-hope goodies for guests.
Family Introductions and Connections
WE C Hope had great success establishing the foundation of our NorCal community at our first event in the Bay Area. While some guests who were new to WE C Hope heard about our event through a medical professional, the LightHouse, or our social media, others are longstanding members of our organization’s family.
One such party is the Luna family, including parents Ysenia and Ruben. They drove their two-year-old Rb patient, Gabby, and her older sisters, Izabella and Jazmine, over four hours from central California because they enjoyed our previous Southern California Family Day so much.
Parents Ysenia and Ruben Luna introduce their family and share their Rb journey with other attendees.
Other families who traveled into the city included Sergio Alvarado, Rosa Saldivar, and their three-year old Rb child, Emilia, as well as Fatima Khoogar, Ian Kirk, and their four-year old Rb kiddo, Soren. Local families included Sneha Madiath, Ashwin Dias, their seven-year-old Rb survivor, Myra, and her five-year-old sister, Frida, along with Alyssa Postlewai, her three-year-old Rb child, Linden, and his grandparents, Greg and Greer Gable.
Being part of an eclectic, diverse group that is able to understand and identify with one distinct characteristic reminds us how important maintaining and expanding our retinoblastoma community is.
Children’s Programming: Learning Vital Coping Techniques
WE C Hope was thrilled to host our first-ever dedicated children’s program at a family day, under the planning and guidance of WE C Hope’s certified child life specialist, Morgan Livingstone. Morgan runs a comprehensive child life program at every One Retinoblastoma World conference, and worked with us to host organized play-based activities rooted in child life principles. As the head of the children’s program for this event, I had the incredible opportunity to follow in Morgan’s footsteps as she and WE C Hope USA President and Rb survivor, Marissa D. Gonzalez, helped me prepare various games and lessons.
We began with a bubble party that parents joined in on. Little Soren’s excited jumps and hugs for his mom, Fatima, stole the show.
Holding a shrimp-shaped bubble-blower, Linden brings the party to his mom, Alyssa.
Soren and his mom, Fatima, smile and hug amongst a cascade of rainbow bubbles.
Next, our kiddos each designed their own prosthetic, or special, eyes with stickers and markers. Although they were provided a template, we encouraged every imaginative version, such as Linden’s eye, which was the ultimate monster truck prosthetic!
From left to right, Emilia and her dad, Sergio, along with Gabby and her sister, Izabella, sit at the craft table to design a prosthetic eye.
One highlight of the program was our eye drop activity where we practiced giving eye drops to stuffed animals. Sitting together in a group, each child took turns sharing eye drop routines, stories, and advice, teaching their stuffed animal friends and each other how to cope with this difficult process. This exercise spotlighted Myra and Linden as natural leaders, while Emilia proved to be the most supportive friend as she cared for her stuffie throughout the rest of the event.
Reflecting on the day, Soren’s mom, Fatima, shared, “One of the most empowering moments for us was the child play-based therapy – especially the activity where the kids gave eye drops to the animals. Doing it alongside other children who “get it” made it even more special. Northern California Rb Family Day was a truly meaningful experience connecting with other families who understand this journey.”
Rb kiddos, Linden and Myra, practice putting eye drops on stuffed animals with children’s program volunteer, Bethany.
Our final activity was a meet-and-greet with The Ocular Octopus, a stuffed octopus with two removable eyes who has an accompanying novel by ocularist, Hillary Yeager. My wonderful volunteer children’s program assistant and Marissa’s cousin, eleven-year-old Abigail, led storytime while the children explored the blue, brown, gray, and green shades of The Ocular Octopus’s various special eyes.
Our volunteers found this activity to be especially impactful to this group of kids because many of them had never met another person with a prosthetic eye. Their growing perspectives remind us how vital tailored support, positive media representation, and community connections are to pediatric cancer patients and survivors.
A snippet of Bethany reading The Ocular Octopus to the children, reminding them how awesome they are!
Sharing Knowledge: Partners in the Blind and Low-Vision Community
During this event, our Rb families heard from several local and national programs that offer services to the blind and low-vision community. Kicking things off, Marissa warmly welcomed our group. She shared the amazing success of the One Rb World 2024 conference in Hawaii, then promoted and encouraged folks to attend the 2026 conference in Texas. Introducing our organization, Marissa gave an overview of World Eye Cancer Hope, its chapters, foundation story, and the many resources offered.
WE C Hope USA Vice President, Lori Baños, mom to an adult Rb survivor, shared her gratitude for these essential regional gatherings saying, “Events like these were not available when my daughter was undergoing treatment and I know that connecting with other parents as they navigate this difficult journey is life-changing.”
Rb Survivor and WE C Hope USA Board of Directors Member Melissa B. Mills was enthusiastic about meeting fellow Northern California Rb families. As a genetic counselor, she emphasized the significance of genetic testing for Rb patients and survivors. She highlighted the importance of understanding what these test results mean for their future cancer risk, the potential risk of retinoblastoma for prospective children, and family planning options.
WE C Hope USA Board Members welcome guests to the very first Northern California Rb Family Day.
Representing the LightHouse, Karen Thompson detailed the organization’s various resources and programs, including Access Technology webinars and classes, orientation and mobility training, and a plethora of in-person and virtual events for the blind and low-vision community. Karen also recalled the LightHouses’s most recent smash-success event: their annual inclusive beeping-egg Easter Egg Hunt, which World Eye Cancer Hope USA sponsored.
Next, Pam Chapin, head of the LightHouse Little Learners, introduced the program and their many services. Little Learners supports children ages zero to three with varying levels of vision loss. Their many wonderful services include in-home visits, preparing for medical appointments, accompanying families to the doctor, and teaching valuable coping techniques for young blind and low-vision children.
Karen shares about San Francisco’s LightHouse for the Blind and Visually Impaired.
Pam explains the LightHouses’s Little Learners program for children ages 0-3 years.
Following the LightHouse presentations, our families welcomed one of WE C Hope’s special guests: Guide Dogs for the Blind (GDB) in San Rafael. Introducing the program were Becky Miller and Jane Flower, along with their furry representatives – Arrow, the K9-Buddy dog; and Jane Flower’s personal guide dog, Pilaf. They explained the intricate process of applying for a guide dog, calling on attendee and survivor Amy Liu’s experience. One of Amy’s guide dogs was bred and trained at the San Rafael campus of GDB, and she recounted the extensive journey.
Offering information cards and swag at their display table, Becky and Jane concluded by sharing their upcoming programs and summer camps, including their one-week orientation and mobility intensive for adults with varying levels of vision loss.
The last presenter our families heard from was author and mother, Paty Millán Montesinos. A new, upcoming author of bilingual children’s books about eye patching, Paty shared her narrative journey and author’s inspiration. She recounted how her now five-year-old son, Marcello, has Coats disease, another rare, eye-blinding condition. His experience ignited her passion for addressing the lack of bilingual and vision impairment representation in children’s books.
Paty currently has two books published: The Pirate and his Magical Eye Patch, and I Love My Magical Eye Patch. Featuring confident main characters who proudly wear their eye patch, Paty’s books represent patients and survivors of many vision conditions that require eye patching. Spotlighting common questions and conversations young patch-wearers often endure, and addressing them through the kind, guiding dialogue of her main characters, Paty breaks new ground as she teaches both sides how to learn from and accept one another.
Guide Dogs for the Blind – San Rafael reps, Jane and Becky, share about their programs with their furry friends, Arrow and Pilaf.
At her display table, Paty describes her books and the inspiration behind them for gathered families.
Conclusions, Reflections, and Thank-You’s
As our fantastic family day came to an end, we heard the invaluable thoughts of our Rb families after vital community building and outreach. Izabella and Jazmine Luna, older sisters of two-year-old Rb patient Gabby, shared their remarks on the event. Speaking for both sisters, Jazmine explained, “I feel like it’s very important to attend days like this for the sense of community it brings. My parents get a chance to see other parents who are going through the same thing, and they can get advice for how other parents manage their journey with retinoblastoma.”
Eager for the next family event, the Dias family shared their excitement for WE C Hope’s upcoming webinars, particularly our Back-to-School and Sibling Support events. Our Back-to-School webinar was held on July 29 and is now available to watch on our YouTube channel, and our sibling support webinar will take place in the fall of 2025.
Our event conclusion would not be complete without a special shout-out to our incredible partner organizations and WE C Hope volunteers! We are so grateful for the support from our presenters, Paty Millán Montesinos, GDB San Rafael Campus, and the LightHouse’s Little Learners, and we’d like to extend another huge thank-you to San Francisco’s LightHouse for the Blind and Visually Impaired for hosting us!
Left: Our wonderful LightHouse representatives, Pam and Karen, preparing snacks! Right: two fantastic WE C Hope USA volunteers prepare to greet and sign in guests. Esther Geller and Marty Gonzalez are also Marissa’s aunt and mom!
Looking Ahead to This Fall
Join us for our next Rb Family Day this fall! WE C Hope USA’s 2025 Southern California Family Day will be held on Saturday, September 27 at Children’s Hospital Los Angeles.
About the Author
Bethany is a senior at UCLA studying English and Italian. As an Executive Assistant for WE C Hope USA, she contributes to children’s programming and writing projects.
When she’s not with WE C Hope, Bethany works at an elementary school. In her free time, Bethany travels, plays music, and volunteers with local Military Kids Programs.
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