Tag Archive for: collaboration

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.

Close-up image of a young African child wearing a cartoon pattern t-shirt, looking directly at the camera. The child's left eye has a noticeable white glow. Over the softly focused background, white text reads What if their eye is telling you something? Below a horizontal golden line is the gold KNOW THE GLOW® logo and the text PREVENT CHILDHOOD BLINDNESS. In the bottom right corner are the Kenyan flag and crests of the government and Kenyatta National Hospital, Nairobi.

Gut Feelings Matter: How Parent Instinct and Intuition Detect Childhood Eye Cancer Early

Strong parent instinct and intuition often lead to a child’s eye cancer diagnosis. Rb Survivor and WE C Hope CEO, Abby White explores what they are and how they differ, why they are so important for retinoblastoma early detection, why primary care providers should take them seriously, and how they impacted the diagnosis journey of four children.

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.

Laulima: Many Hands, One Retinoblastoma World

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.

Three young girls sit one behind the other as they enjoy riding together down a slide. The girl at the back has curly brown hair and wears a light pink sweater. The middle girl has blonde hair and wears a light purple shirt. The girl in front has light brown hair, wears a pink top, and holds a plaid cushion. They are surrounded by green foliage and trees in the background. The sun creates halos around their hair as it blows with their movement down the slide, and blue sky is seen in the top right corner, beyond the trees..

Bridging the Gaps: How Community and Shared Responsibility Create the Best Retinoblastoma Care

Being the parent of a child with retinoblastoma, or living with the effects of this cancer every day, can be a frustrating experience. With an emphasis on our year-long theme of early diagnosis, we look at some of the challenges facing our retinoblastoma world, and for each, three ways we can work together to advance care for everyone.

On a marine-blue background, large bold yellow-gold text reads "WE C Hope". The letter “P” in the word “hope” is formed by a bright gold ribbon – this is the central feature of the entire image. Below, smaller text reads "For every child, survivor, and family living with childhood eye cancer". The website wechope.org is included at the bottom in the smallest text.

Solidarity, Strength, and Synergy: The Gold Ribbon and the Global Fight Against Childhood Cancer

The gold ribbon is the unifying symbol of childhood cancer. Worldwide, it celebrates the victory of each life saved, honours the memory of every precious child lost, and shines with hope of cure for all children. WE C Hope CEO, Abby White, explains four key reasons we support the gold ribbon campaign, and shares new gold ribbon merch designs you can buy to support our retinoblastoma community.

Three sets of eyes represent different ethnic groups, each labelled with their respective ethnicity. The “White” eyes show bright red reflex, the “Asian” eyes display a yellowish reflex, and the 'Black' eyes have a creamy-white reflex. These colours are visible in the pupils of the eyes.

The Arclight and Fundal Reflex Test: Shining the Light on Retinoblastoma

Screening children’s eyes with the Fundal “Red” Reflex is key to early detection of retinoblastoma, but until recently, it was difficult to deliver in many countries. Dr Andrew Blaikie, ophthalmologist and clinical lead for the Arclight Project at the University of St Andrews, describes the importance of this simple exam, and how the Arclight improves eye health access and outcomes for children with eye cancer around the world.

Side-by-side photos of two young girls with a text overlay. On the left, a smiling Caucasian girl with wispy light brown hair, wearing a floral dress, holds a bouquet of daisies. She is outdoors, bathed in sunlight. On the right, a smiling African girl with short black hair relaxes on a colourful plaid sofa. She is wearing a pink top with a ruffled neckline, and rests her cheek on her hand. Across the top, in cursive script, text reads "Daisy Gave Rati Hope".

From One Child to One Rb World: Our Foundation Story

Daisy’s Eye Cancer Fund (now World Eye Cancer Hope) evolved from the generosity of one family sharing hope with another at opposite ends of the earth, creating light within the darkness that retinoblastoma brought to their lives. Rb Survivor and Daisy Fund co-founder, Abby White, shares Rati’s story, and how her experience led to our hope-building work today.

A large group of people gather together for a group photo. Some are wearing beaded t-shirts showing the Daisy Fund logo.

From One Child to One Rb World: WE C Hope for Retinoblastoma Care

In the first half of this article, we met Rati and Daisy, two young children with retinoblastoma who inspired the foundation of Daisy’s Eye Cancer Fund in 2004. In part 2, Rb Survivor and Daisy Fund co-founder, Abby White, reflects on what happened after Rati died – our journey to World Eye Cancer Hope (WE C Hope), One Rb World, and advocacy for all children, survivors and families.

A collage of 8 small photos, showing buildings and people doing various activities, all bathed in green, pink, blue or purple light. Along the bottom, a banner reads "RARE DISEASE DAY GLOBAL CHAIN OF LIGHTS" and “hashtag LIGHT UP FOR RARE", written in blue, green and pink. The event logo features handprints in the three colours, overlapping to form a fan around a white silhouette of a person from waist-up, and additional colours where they overlap.

Light Up for Rare and Share Your Retinoblastoma Colours on February 29!

Retinoblastoma is a rare cancer, affecting around 1 in 16,000 live births.  Rarity poses challenges from pre-diagnosis through treatment and lifelong care – Rare Disease Day matters to our community!  Discover how you can glow bright on the evening of February 29 to help form a Global Chain of Light for everyone living with rare childhood eye cancer and its effects.

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.

Capture the Moment at One Retinoblastoma World 2024 in Hawaii

One Retinoblastoma World is community, conversation and collaboration for the best lifelong Rb care and support.  Previous participants share why the event is so valuable.  Rb survivor and WE C Hope CEO, Abby White, considers the many benefits of participating in person compared to attending online, and some ways we can travel “kuleana” to the conference.