Pearls of Light: The Pathway to Retinoblastoma Early Detection

Monday June 24, 2024

Early diagnosis of retinoblastoma saves children’s lives, and offers the best opportunity for safe vision saving therapy.  But worldwide, many children are diagnosed late.  KnowTheGlow founder, Megan Webber, and WE C Hope USA President, Marissa D. Gonzalez discuss how our early detection partnership evolved, and update on the progress we’re making for children in Africa and Asia.

KnowTheGlow awareness poster. Text reads: What if their eye is telling you something? Know the glow logo is in the bottom right corner. On the left, an African child smiles broadly at the camera and a white glow is visible in their left eye.

KnowTheGlow co-founder, Megan Webber, discusses why the early detection partnership is vital for children and families, and how collaboration enhances care.

The Silent Shining Call of a Child’s Eye

In the vast expanse of the human eye lies an ocean of stories waiting to be told. Each glance, flicker, and sparkle a unique narrative.  Sometimes, amidst this deep ocean of tales, a child’s eye holds a pearl. A secret glow revealed only in dim light, with an urgent, precious message: my life and sight may be in danger – pay attention, seek an eye exam now!

Much like the pearl’s formation in the oyster shell, this glow emerges from an agitation, a disturbance in the delicate balance of the eye’s environment. The manifesting glow is often captured in flash photos, or seen fleetingly with the naked eye in dim light.  Subtle yet crucial indication of a potentially life-threatening or vision threatening eye condition lurking within.

At KnowTheGlow (KTG), we recognize the importance of heeding this silent call for attention. With a global perspective, we’ve embarked on a mission to ensure this urgent message transcends borders, reaching distant shores, minds, and hearts.

From Croatia to Kenya, Nigeria to Oceania, Tanzania to Tibet, Venezuela to Vietnam – and soon Brazil, Korea, and Switzerland, our message of awareness travels far and wide.  Like a wave flowing around the world, it carries the tools and information needed to recognize and address retinoblastoma and other childhood eye disease in time to save children’s lives, and increase potential to save sight.

Empowering Diagnosis with Innovation

Central to our efforts is the use of innovative diagnostic tools like the Arclight, a portable ophthalmoscope enabling quick, efficient eye exams, even in remote locations. By combining these tools with KTG messaging, we empower communities with the knowledge and resources they need to detect retinoblastoma before it has the chance to spread beyond the eye and threaten a child’s life.

The Arclight is an efficient high-tech, low-cost, solar-powered device. Coupled with comprehensive training and educational programs, healthcare providers are equipped with the tools, skills, and knowledge they need to screen eyes and detect retinoblastoma in its early stages.

In August 2023, I attended ISOO Africa in Mombasa, Kenya.  This was the first-ever continental meeting hosted by the International Society of Ocular Oncology (ISOO).

Collaborating with ocular oncologists over three days, Marissa and I witnessed first-hand the dedication and passion of those on the front lines of the fight against retinoblastoma, and the many challenges they face in saving children’s lives across Africa.

WE C Hope’s first international collaboration began in Kenya. So it was fitting that the seeds of collaboration between KTG and WE C Hope were sown among the many discussions in Kenya, as we recognized the potential for even greater impact through partnership.

Dr. Kahaki Kimani, Marissa Gonzalez, and Megan Webber stand smiling together in formal wear at an outdoor evening event. They are surrounded by palm trees and other tropical plants. Behind them, an entertainment stage is illuminated by a glowing blue sign bearing the words: The Sound of Hope., and the logos of ISOO Africa and Sheba Foundation.

Megan (right) with Marissa (centre) and Dr. Kahaki Kimani (left, director of the retinoblastoma program at Kenyatta National Hospital, Nairobi) during the ISOO Africa gala dinner.

Teamwork, Tools and Training

Inspired and challenged by our time with Africa’s dedicated ocular oncologists, KTG and WE C Hope were driven to dive deeper into early diagnosis together. We recognize that early detection is the cornerstone of optimal care – the most effective way to reduce preventable death and childhood blindness, and improve patient and family outcomes.

So we linked arms and transformed ourselves into modern-day pearl fishers.  We ventured into the unknown depths to uncover the treasures signalling children’s threatened lives – all hiding in plain sight.

We crafted a plan to support these incredible doctors and their communities. WE C Hope brings funding for the Arclights, as well as information and support for families through retinoblastoma diagnosis and beyond. KTG provides key glow awareness messaging, and The Arclight Project delivers on-site team training.

We are working hand in hand to build practical solutions that span the diagnosis journey, from observation and action, through screening and referral, to treatment, aftercare, and psychosocial support.

Early detection is an empty victory if families can’t access referral or care, or accept lifesaving treatment, or feel isolated and overwhelmed in their cancer experience.  At KTG, we recognize the need for comprehensive family support, from the moment of retinoblastoma diagnosis through the treatment journey and beyond.

WE C Hope provides information, support, and advocacy for families from before diagnosis through every step of the cancer care and life experience.  With their support, we can ensure no family faces the challenges of retinoblastoma alone.

Empowering Kids’ Eye Care Together

Our partnership has delivered or committed 300 Arclight ophthalmoscopes, professional training, and public education resources to six countries across sub-Saharan Africa and Asia.  The Arclight devices are provided to partners in each country who already deliver community health outreach programs to children and families.  Ultimately, the partnerships will save more children from the grips of this devastating cancer.

KTG is beyond grateful to Marissa Gonzales for her generous contribution to this effort.  Her brilliant idea of triangulating the early detection efforts of KTG’s glow awareness campaigns, Arclight’s novel approach to screening and referral, and WE C Hope’s family-centered global approach to retinoblastoma care has created a truly impactful partnership with great potential to save children’s lives and sight around the world.

Together, KTG, WE C Hope, and The Arclight Project have created a model for collaboration that extends beyond borders and across disciplines. We demonstrate the power of unity in the fight against childhood cancer, death, and blindness.

We continue on our journey, illuminating this pathway to early detection, referral, diagnosis, and care.  Together, we can ensure that every child has the opportunity to overcome eye cancer and live their best life filled with hope and resilience.

Turning Tides, Saving Lives

The pearl reminds us that beauty and strength can emerge from adversity, and by seeking pearls among the sea of children, we can find and save the greatest treasures – the young innocent lives threatened by cancer.

So please dive deep with us as we explore new horizons and continue to shine our light on retinoblastoma.  Together, we are swimming a swift current of change for the world’s children that will uncover more glowing lifesaving pearls in record time.

Close-up of a young African boy smiling broadly. He has short hair and wears a blue tank top. The background is blurred with warm, earthy tones. Overlaying text reads: A photo can identify cancer in a child’s eye. 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.

KTG awareness posters – click below for different poster designs and languages

Bangladesh | Canada | Croatia | India | Kenya | Nepal & Tibet | Nigeria | Oceania | Philippine | Spain | Tanzania | United States | United Kingdom | Venezuela | Vietnam

WE C Hope USA president and bilateral Rb survivor, Marissa D. Gonzalez, recounts the formulation of this partnership in Kenya last August, and shares updates from several partner countries.

Spotlighting Our Global Community

World Eye Cancer Hope USA is grateful to Megan Webber and her team at KnowTheGlow for introducing us to the Arclight project.

In August 2023, I attended the ISOO Africa meeting along with Megan. Primarily focused on retinoblastoma, the conference opened my eyes to the vast differences and struggles lower and middle-income countries face in the field of pediatric oncology.

My learning was profound. Medical professionals from over 25 African countries illuminated the harsh reality that simply getting a child diagnosed can be a miracle, let alone seeing the child through treatment and beyond.

During ISOO Africa, Megan convened a community breakfast where Dr. Andrew Blaikie of St. Andrew’s University, Scotland, and Dr. Karsten Paust, German founder of the blindness prevention charity TanZanEye, demonstrated the Arclight ophthalmoscope.  Together, they showcased its versatility examining eyes, and its value especially in resource limited settings,

Key stakeholders from various nations expressed their need for these low cost, easy to maintain devices in rural communities to detect retinoblastoma and other eye diseases early. It was at this breakfast when, overwhelmed by the state of Rb in Africa, I felt compelled to help in any way I could. This led to WE C Hope USA donating $5,000 worth of Arclight devices to low and middle income countries (LMIC’s) in Africa and Asia.

We are thrilled that by early May 2024, we have delivered 50 Arclight ophthalmoscopes each to Uganda, Nigeria, Nepal, and Tanzania.  Plans are evolving to extend this collaboration in Ghana and Kenya.

I am personally invested in this amazing project after getting to know some of the incredible men and women on the front lines of retinoblastoma in Africa and Asia. I can’t wait to share these stories at the upcoming One Retinoblastoma World conference in Hawaii this October.

TanZanEye – A Brilliant Community Eye Health Asset

In March 2024, the TanZanEye team spent two weeks training at Kabanga Referral Hospital in the Kigoma region of Tanzania. Ophthalmologist, Dr. Karsten Paust, who led the team, reported back to us:

“Arclight training increasingly involves on-the-job training of ophthalmic assistants (“eye nurses”). We also conducted a teaching of local community health workers. They are usually general nurses, not active in the eye care sector. They were taught basic ophthalmological knowledge. In addition to the ophthalmic nurses, they should now be able to find people with eye diseases and refer them to an eye unit.

So, World Eye Cancer Hope USA, thank you once again for supporting us with 50 Arclights for our project. We took them to Tanzania and equipped eye nurses and community health workers. The Arclight ophthalmoscope will be a brilliant tool for them to examine and detect patients with eye diseases.”

A female medical professional in a black shirt holds a patient’s head steady while she uses the Arclight ophthalmoscope to look into his eyes. The Arclight’s powerful torch light illuminates the area around the patient’s eye. They are inside and sitting against a yellow wall.

A medical professionals uses an Arclight ophthalmoscope to look into a patient’s eye.

30 TanZanEye trainees smile and hold their paper certificates in front of a yellow building with a red thatched roof.

The TanZanEye trainees received their certificates after learning to correctly use the Arclight ophthalmoscope, interpret examination findings, and take steps to refer the patient as needed.

Arclights in Nigeria – Supporting Eye Exams at Immunization

Arclight ophthalmoscopes were delivered to two retinoblastoma physicians in Nigeria, increasing reach across the country. Dr. Ifeoma Ezegwui of the University of Nigeria, and Dr. Ifeoma Umeche-Echieh of the University of Calabar Teaching Hospital are eager to put these devices to work in the community. Dr. Ezegwui said:

“I express my profound gratitude for the 25 Arclight ophthalmoscopes. I’m really grateful and my department will train nurses in Immunization clinics to use them in early detection of retinoblastoma.”

Both Nigerian doctors will present virtually at the One Retinoblastoma World conference this October to discuss the state of retinoblastoma in their country.

Open Eyes Nepal – Kids Eye Care at Vaccination and Community Clinics

Open Eyes Nepal received 50 Arclight ophthalmoscopes in early 2024 and wasted no time putting them to use. Led by ocular oncologist and oculoplastic surgeon, Dr. Purnima Sthapit, training in the field took place in March. Dr. Sthapit recaps the event:

“I am happy to inform you that we conducted the ‘Arclight Distribution and Awareness Program’ in Bhaktapur, Nepal with the Arclights World Eye Cancer Hope USA donated to us. There were 22 participants including school nurses, vaccine nurses, and female community health volunteers. We are planning to conduct a similar program in another district with the remaining Arclights.”

Alt text: Four women wearing colourful attire, and one man in a dark suit each hold and examine an Arclight ophthalmoscope. One woman holds it up to her eye while examining a test block she is holding at arm’s length in her other hand. The man points at the device in another woman’s hand as she closely follows his guidance.

Dr. Purnima Sthapit shares a presentation about early detection and awareness for retinoblastoma.

Alt text: Dr. Purnima Sthapit stands at the front of the room delivering a presentation. The current slide says: White eye reflex detection with ophthalmoscopy. The photo on-screen is of a young child with a white glow in their left eye. Men and women seated around a long table, are looking either at the presenter of the projector screen.

The Open Eyes Nepal Team demonstrates how to use the Arclight ophthalmoscope. 

Hawaii’s Precious Pearls Are Calling!

Momi [MOH-mee] n. (Hawaiian)

  1. Pearl
  2. Something rare and precious

In Hawaiian culture, pearls symbolize rarity and beauty, often treasured as precious gifts from the sea that embody the ocean’s serene and sacred qualities.  For many in the English-speaking world, the word “momi” also evokes the tender call of a child to their mother.

Just as the child calls to their mother for attention, the pearlescent glow caused by rare retinoblastoma calls from deep in the affected eye, urging the observer to seek medical care.

WE C Hope USA is excited to be hosting the 7th One Retinoblastoma World meeting in Honolulu, Hawaii, this October, in collaboration with our friends in Australia.  In the heart of the Pacific, we will celebrate all our “momi” – the precious lives we strive to protect through early detection, quality holistic care, and advancing research.  Please join us in Hawaii, October 15-17!

A pink banner with the words “Register Now” spans the top of the image. Diamond Head and Waikiki Beach in Honolulu are bathed in light, under a slightly cloudy blue sky. Along the coastline, gold reflections from the many buildings ripple and merge into the turquoise ocean. The One Rb World logo includes a pink flower for Hawaii. Text reads: “One Retinoblastoma World, Honolulu, Hawaii | October 15-17, 2024.”

About the Authors

Megan Webber is the Co-Founder of KnowTheGlow. A non-profit organization aimed at globally eliminating preventable childhood blindness through building awareness of the characteristic white glow in a child’s eye. She is also a Foundation Board of Trustees member at Children’s Hospital Los Angeles, and has served on multiple boards of organizations dedicated to supporting the doctors and patients at CHLA.

Megan Webber

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. She was Event Chair for the One Retinoblastoma World Conference in 2017 and 2021, and also for this year’s conference in Hawaii. In her downtime, Marissa enjoys travelling and going to Disneyland.

Marissa D. Gonzalez

You May Also Like…

Early Diagnosis is the Bedrock of Retinoblastoma Care

Despite advances in retinoblastoma treatment, effective care is challenged globally by delayed diagnosis. Early diagnosis saves lives and improves sight-saving options. Rb survivor and WE C Hope CEO, Abby White, explores common reasons for delayed diagnosis, four pillars needed to achieve routine early diagnosis, and how our One Rb World community is united in this goal.

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.

When ‘Something’ Looks the Same As ‘Nothing’: Strabismus, Leukocoria and Childhood Eye Cancer

Strabismus (turned eye) and leukocoria (white pupil), the most common signs of retinoblastoma, can also occur in healthy eyes. Sandra Staffieri, Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne, examines both and answers the key question – when should parents and doctors be concerned?

Perfect Vision: Care and Cure for Children with Eye Cancer in Developing Countries

Retinoblastoma is highly curable with early diagnosis and modern therapies. But 90% of affected children live in developing countries, and globally, less than 3 in 10 children survive. Rb survivor and volunteer CEO, Abby White, explores the biggest challenges to care in developing countries, and some ways to overcome them.

0 replies

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *