Tag Archive for: retinoblastoma research

A table-top display is set up against tall windows that let in soft daylight. Yellow cards are neatly arranged across the black tri-fold presentation board, each one held in place with a small gold awareness ribbon sticker. Every card shares a printed personal story or message. On the left side of the table, a white sign mounted on black backing is titled: Through Our Eyes and notes the display is sponsored by Kyriaki’s Retinoblastoma Foundation. In front of the board on the table are two pens, a small stack of blank yellow cards for visitors to write on, and a roll of decorative gold ribbon stickers. On the right panel of the display board, one yellow card stands slightly apart from the others, with a handwritten invitation: Please feel free to add your thoughts and comments.

Through Our Eyes at One Retinoblastoma World 2017

Parents and survivors shared their thoughts on the “Through Our Eyes” wall at the One Rb World meeting in Washington D.C., 9-11 October 2017. These powerful insights were gathered anonymously via this website during September 2017, and highlight wide-ranging concerns.

Two women are seated at a round table in a conference room, directly facing each other as they engage in deep discussion. The woman on the left clasps her hands on her lap and looks highly focused. The woman on the right gesticulates with both hands raised to chest level, palms facing towards the other woman, with her fingers splayed. She appears to be explaining or emphasizing a point, or trying to convey information clearly. A tablet and notepad rest on the table between the two ladies.

Why Being There Matters: Community, Collaboration, and Care at One Retinoblastoma World 2026

One Retinoblastoma World is community, conversation, and collaboration in action. Families, survivors, and professionals unite to share knowledge and lived experience, shaping lifelong Rb care and support. WE C Hope CEO, Abby White, and WE C Hope USA President, Marissa D. Gonzalez, both Rb survivors, explore why being together in San Antonio this September matters so deeply for all in our community.

Grace stands in front of a Hawaiian-themed backdrop of lush green foliage, flowers, fairy lights, and the word Aloha written in a glittery gold cursive font. She wears a beautiful floral dress in shades of pale pink, orange, and white. Her conference lanyard clearly shows her name badge, reading Grace Mbugua. She smiles broadly and holds a sign in each hand – one says: World Eye Cancer Hope - life and sight for every child. The other says: One Retinoblastoma World, Honolulu, Hawaii, October 15-17, 2024.

One Rb World 2024 Shines the Light on Life-Saving Care: Highlights from Hawaii Day Two | Page 2

Continuing our review of Day Two at the 7th One Rb World Conference in Honolulu, Hawaii, we explore critical life-saving advancements in global retinoblastoma care. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, delves deeper into the research developments, technological breakthroughs, collaborations, joyful child life, and uplifting survivor stories shaping a brighter future for all.

Two young girls stand side-by-side in front of a colorful Hawaiian backdrop of gold grass skirt and verdant green leaves adorned with pineapples and vibrant hibiscus flowers. Both girls wear leis, smile broadly, and hold signs displaying bright logos. On the left, Nicole is wearing a black baseball cap backwards, a yellow t-shirt, and white joggers, and holds a white sign that reads: One Retinoblastoma World, Honolulu, Hawaii, October 15-17, 2024. On the right, Natalie sports her pink glasses, pink t-shirt, and light blue jeans, and holds a white sign that says: World Eye Cancer Hope, life and sight for every child.

One Rb World 2024 Shines the Light on Life-Saving Care: Highlights from Hawaii Day Two | Page 1

The 7th One Retinoblastoma World conference took place in Honolulu, Hawaii over three days in October 2024. Day Two brought perspectives from around the globe as our scientific programming took center stage. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, shares highlights from discussions on life-saving care and technological advances in the second installment of this three-part conference review.

A blue question mark hangs in the forefront of the image. In the background, a man in a lab coat holds the end of his stethoscope towards the camera to form the dot of the blue question mark.

Wiki Wiki!: Accelerating Referral for Retinoblastoma and Second Cancers

The Hawaiian word “wiki wiki” means “fast”.  The global wiki culture embodies the urgent collaborative action needed for children with possible retinoblastoma, and survivors with second cancer risk.  Timely diagnosis is the best cure, but referral delays are common worldwide.  WE C Hope CEO Abby White explores common causes, how to avoid them, and speed up referral for optimal care.

On the left of a large conference room, a speaker stands at a wooden podium, addressing the audience. David is a white man wearing a blue suit. Beside him, fellow panelists sit at a long table draped with a cloth bearing the One Rb World logo. A large screen displays key discussion points on Retinoblastoma Survivorship Care – bullet points are out of focus. The audience is seated at round tables with white tablecloths, attentively listening and watching both the panelists and screen. The room is decorated in dark wood paneling and large murals depicting natural landscapes.

Hawaii Says “ALOHA” to the 7th One Rb World Conference and Global Retinoblastoma Community

The shores of Waikiki Beach welcomed 175 guests to the 7th One Rb World conference this month, and more online, as Honolulu played host to this incredible meeting of retinoblastoma patients, survivors, families and medical professionals. Marissa D. Gonzalez, President of World Eye Cancer Hope USA, and Conference Event Chair, reflects on the social gathering and Day One of the program in the first installment of this three-part conference review.

View along a vast valley under a dramatic sky. On the left, rocks are strewn in the foreground, and steep rugged hills lie in shadow. Sunlight breaks through dark clouds above, illuminating the verdant valley floor and rolling green hills beyond. A lush oak tree stands prominently in the foreground, its canopy festooned with childhood cancer gold ribbons. A meandering path leads up to the tree and continues into the distance, following the contours of the hills into the misty brightening distance.

Screening for Familial Retinoblastoma and Related Second Primary Cancers

Familial retinoblastoma affects more than one person in a family, and individuals with a heritable RB1 gene mutation have increased cancer risk throughout life. Finding cancer early is vital for the best treatment and outcomes. Revisiting blogs from ocular oncologist Alison Skalet M.D. PhD, and WE C Hope CEO / Rb Survivor, Abby White, we explore screening for high-risk individuals at all stages of life.

A black and silver compass tipped on its side facing the camera. The compass is sitting on top of an open paper map that extends out behind it out of focus.

Referral for Possible Retinoblastoma or Second Primary Cancer

Many parents and survivors report signs and symptoms of retinoblastoma and related second cancers to primary care providers. Prompt referral is vital for timely diagnosis and optimal treatment. WE C Hope CEO Abby White explores who needs referral and when, and the key elements of an effective referral process – for children with possible eye cancer, and survivors throughout life.

A young boy sits on his mother’s lap and next to his father while having an eye exam. Both parents help to keep him calm and still. An orthoptist sits about arm’s length away, holding an ophthalmoscope up to her own eye to observe the child's eyes. In her other hand, she holds a brightly coloured rattler toy, encouraging the child to look at her. The ophthalmoscope’s powerful light illuminates the child’s eyes in the dimly lit room. A Snellen chart also glows on the wall behind the family.

Early Detection Saves Lives: Primary Care, Retinoblastoma, and Second Cancers

Primary care providers are pivotal in the timely diagnosis of retinoblastoma and related second cancers.  They are usually the first contact for parents and survivors concerned about signs and symptoms.  WE C Hope CEO Abby White explores their key role, the challenges they face in recognizing signs and securing a swift referral, and the need for education targeting primary care providers.

Two small group discussions are taking place around separate tables.

Ohana: The Beating Heart of One Retinoblastoma World 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.