The wildfires in California impacted so many members of the KTG community.  Many have lost their homes or been forced to evacuate for possibly months until their homes are rebuilt.  KTG’s own Partnership Liaison, Caitlin Villante, and Medical Advisory Board Member, Dr. Jesse Berry, both lost their homes in the fire as did Benjamin Webber’s CHLA doctor, Dr. Thomas Lee.

  
Still, we know that we will move forward with resilience, guided by our mission and strengthened by the incredible support of our community. Together, we can continue to bring hope and awareness to families around the world.

This recent news story on Dr. Jesse Berry speaks to her dedication to improving pediatric vision care as she and all those who have suffered from the fires continue to inspire us all.

We are thrilled to welcome Ruth Ngaruiya to the KnowTheGlow team as our Program Manager for Africa. Based in Nairobi, Kenya, Ruth brings a wealth of experience and a deep personal commitment to supporting children with cancer. Her dedication, inspired by her role in a friend's retinoblastoma journey, makes her an invaluable addition to our mission. We look forward to the incredible impact she will make across the region!

KnowTheGlow is honored to announce Zaakirah Nayyar as our Kenya Ambassador. Diagnosed with bilateral retinoblastoma as an infant, Zaakirah has transformed her journey of resilience into a mission of advocacy, raising awareness about childhood eye cancer. Now based in Kenya, Zaakirah combines her passion for photography with her dedication to empowering families and promoting early detection. Her inspiring story and unwavering commitment will undoubtedly shine a light on KnowTheGlow’s mission across Kenya and beyond.

KnowTheGlow is proud to share that Board Member Cindy Mays and Kenya Ambassador Grace Mbugua attended the One Retinoblastoma World Conference with Megan this past October to share insights on the KnowTheGlow Around the Globe Panel. They joined a global network of parents, survivors, and medical professionals to share insights, raise awareness, and discuss strategies for improving early detection and care for children with retinoblastoma. Cindy and Grace’s powerful testimonies underscored the diverse challenges families face across different healthcare systems, highlighting the importance of global collaboration. Their participation embodies KnowTheGlow’s mission to bring light and hope to families worldwide.

KnowTheGlow is excited to launch our first campaign of the year in Uganda, running from January 15 to March 15. With the support of an incredible team in Uganda, we’re spreading awareness of the Glow and the importance of early detection. Stay tuned for compelling articles and updates throughout the campaign as we shine a light on this critical mission.

KTG is continuing it’s ongoing and permanent support of Sub-Saharan Africa by moving from Anglophone messaging in 2024 to Francophone awareness mini-campaigns running in 2025.  Each year we will alternate but the Francophone countries that will be receiving year-round messaging this year include Algeria, Benin, Burkina Faso, Burundi, Cameroon, the Central African Republic, Chad, Comoros, the Democratic Republic of Congo, Congo, the Côte d'Ivoire, Djibouti, Gabon, Guinea, Madagascar, Mali, Niger, Rwanda, Senegal, the Seychelles, and Togo.

KnowTheGlow’s impact continues to grow globally, expanding across almost every continent to save sight and raise awareness for early detection of glow-related diseases. With campaigns already reaching countless families, doctors, and supporters, we’re proud to highlight the global network we've built through our ongoing efforts. In 2025, our campaigns will kick off in Uganda, followed by outreach in Nepal, Chile, Ghana, Congo, and Greece, helping to illuminate the path to early detection in even more countries. Stay tuned as KnowTheGlow goes GLOWbal, making a lasting difference for children worldwide.

We’re excited to announce the launch of KnowTheGlow’s participation in the first-ever Rare Advocacy Immersion Course at the University of Notre Dame! This innovative program run by Professor Barbara Calhoun builds on the success of our KnowTheGlow Student Chapter, offering students studying Patient Advocacy a deeper, hands-on opportunity to advance global awareness for early detection of glow-related diseases. For seven weeks, students will engage in collaborative research, campaign preparation, and outreach projects, gaining valuable experience while contributing to our mission of preventing childhood blindness worldwide. Stay tuned for updates on the remarkable work these students will accomplish!

When Hannah was about 10 months old, I was getting ready to change her diaper. As I laid her down on the changing table, the light in the nursery hit her eye at just the right angle and I saw her pupil completely change color.

When Liz Nagel was just six months old, her mother and family began to notice something strange in the photos taken of her daughter. Liz’s left pupil had a strange reflection, almost a glow.

The sun shone through the living room window directly onto Austin’s 4-year-old face.  With the light hitting his eye in just the right way, a friend noticed she could “see through” Austin’s eye when looking at him from the side. 

Around Izzy’s first birthday, I started to notice a strange glow in her right eye when the light hit it in just the right way.  I noticed it on a few occasions and became concerned. 

Trusting her instincts, Wes’ mother sought a second opinion. A specialist delivered the devastating news: Wes had bilateral retinoblastoma, a rare form of eye cancer, and recommended the removal of both eyes.

At the beginning of October, we noticed a small white spot in Harmonee’s eye. It was only visible at certain angles and lights.  It was odd, but small and infrequent so we didn’t think much of it.  We assumed it was just a strange reflection. 

Grace’s six month well visit, her doctor floated a pen in Grace’s visual field, but she did not follow the pen with her eyes or reach for it.  She then turned on a small flashlight...

Kait Weber was well aware of Retinoblastoma (RB), a rare cancer that can develop in the back of the eyes of children.  Her maternal aunt sadly had passed away at just 4 years of age after a long battle with RB. Her mother told Kait how the cancer had first been detected after a white glow was seen by her grandmother. 

Walking out of the doctor’s office, I was a perfectly healthy two-year-old boy. Just two weeks later we entered the store and turned my head to the right, and the shining white lights of the Home Depot aisle caught my eye at just the right angle, and in this one instant, my dad saw a glint of white flashing from my left eye. 

Zaakirah’s advocacy for childhood eye cancer survivors and her remarkable story of resilience and empowerment shine as a beacon of hope and awareness for families worldwide.

When Kyle was only ten months old, his parents noticed something unusual with his eyes—specifically, a slight glow in photographs and a crossing of the eyes.

We are thrilled to share that Dr. Jesse Berry, a valued member of KnowTheGlow’s Medical Advisory Board, has been named Chief of the Division of Pediatric Ophthalmology at Children’s Hospital Los Angeles (CHLA)!

Dr. Berry, a Harvard-trained Professor of Ophthalmology with subspecialty expertise in Ocular Oncology, has dedicated her career to advancing clinical care, research, and mentorship. She also holds the prestigious A. Linn Murphree Chair in Retinoblastoma, leading CHLA’s renowned RB and pediatric ocular oncology program.

Please join us in congratulating Dr. Berry on this well-deserved achievement!

Dr. Yogita Rajgandhi

A distinguished optometrist and low-vision specialist, has significantly impacted eye care and community service across India. Her contributions have been transformative, from educational workshops to innovative technology initiatives and community programs; the contributions of esteemed optometrist Yogita L. Rajgandhi are boundless. 

Dr. Bhola’s journey from India to becoming one of the most respected pediatric ophthalmologists in the U.S. is a remarkable story of passion and dedication. Originally trained in India, Dr. Bhola’s aspirations brought him to the U.S. in the early 2000s, where he embarked on a path of relentless pursuit of excellence.

Dr. Allen is not only leading a groundbreaking study but also invented the innovative Neocam device, designed to close a significant gap in newborn eye care. Her work has the potential to revolutionize the way congenital cataracts are detected, particularly in communities where traditional screening methods often fall short.

Dr. Dessalegn has faced heart-wrenching cases of RB, all arriving too late for early intervention. Her encounters with late-stage, extraocular RB cases drove her to search for solutions, leading her to  be touched by KnowTheGlow’s mission.

She has led and supervised several multi-stakeholder qualitative and quantitative research projects on health, nutrition, maternal & child Health, Sexual and reproductive child health, Infant and young child feeding,  education, and livelihood funded by national and international agencies/ donors for implementing policy and programs in our country. 

Dr. Muiz, who is a Cataract and Refractive Surgeon at Optimax Eye Specialist Center, also serves as the president of the Malaysian Society of Ophthalmology (MSO) and vice-president of the ASEAN Ophthalmology Society (AOS) . His experience and leadership have positioned him as a key figure in addressing the challenges of pediatric ophthalmology in Malaysia.

Dr. Lusobya’s journey began with a painful lesson. As a young general practitioner in a remote Ugandan village, she encountered a one-year-old child whose eyes were severely protruding—a symptom of advanced retinoblastoma (RB), a rare childhood eye cancer.

Dr. Mwanja is a Pediatric Ophthalmologist and Strabismus surgeon with an impressive academic background. He began his journey at Makerere University and furthered his expertise at Kilimanjaro Christian Medical University College. Currently, he works as a super-specialist doctor and researcher at Ruharo Mission Hospital and is a pediatric ophthalmologist with Christian Blind Mission (CBM) International.

Dr. Vasquez’s path to her current role as a consultant is rooted in her deep love for children and her unwavering dedication to medicine.  Born and raised in Peru, Dr. Vasquez is the first in her family to become a cancer doctor. Her journey began as a pediatrician, a necessary precursor to becoming a pediatric oncologist in Peru.

Trained in Switzerland and with experience working in Paris, Dr. Kandeke faced the daunting reality of returning to a nation with no ophthalmologists and limited medical infrastructure. “There was nothing there,” he recalls. “I knew I would have to start from the beginning.”

Dr. Aliraki’s journey into ophthalmology began in 2002 when he was working as a medical officer at Pope John’s Hospital Aber in Northern Uganda. One day, a very skilled and hard-working midwife and a colleague obtained a severe eye injury, and the closest eye clinic was 66 kilometers away. 

Dr. Simon Arunga, an accomplished ophthalmologist and founder of Dr. Arunga’s Eye Hospital in Uganda, has dedicated his life to addressing the complex landscape of eye care in his country. As a researcher, educator, and clinician, Dr. Arunga’s work bridges the gap between advanced medical knowledge and the pressing needs of his community.

This exclusive event brings together global leaders in eye health to foster collaboration, ignite leadership, and advance advocacy for universal eye care. We look forward to sharing insights from this transformative gathering as we work towards a future where every child has access to early detection and treatment.

KnowTheGlow is proud to announce its membership in Childhood Cancer International (CCI), a global network dedicated to improving the lives of children with cancer. As part of this esteemed organization, we look forward to collaborating on initiatives that promote early detection and raise awareness of childhood eye cancers like retinoblastoma. Together, we aim to make a meaningful impact in the fight against childhood blindness and cancer.

KnowTheGlow is thrilled to announce a partnership with Retina Suisse, Switzerland's only patient association dedicated to eye diseases. Founded in 1979 to support individuals with retinitis pigmentosa, Retina Suisse has since broadened its mission to address a range of retinal conditions, providing support, information, and advocacy to its 1,600 members. Learn more at retina.ch.

We are excited to announce the successful collaboration between KnowTheGlow, We C Hope, and the ArcLight Project. As part of this initiative, KnowTheGlow has donated 50 ArcLight ophthalmoscopes, which will be distributed to countries across Africa to improve access to early eye care. This triangular effort highlights the power of collective action, demonstrating how coming together can make a significant impact. Every contribution, big or small, helps illuminate lives and brings us closer to better healthcare for children in need.

Arclight Team (Oct 2024):

The amazing Arclight team conducted a training session in Uganda.

In August, The Arclight Project, with support from Eye Health Africa, trained thirty ophthalmic clinicians from Uganda to implement use of the Arclight ophthalmoscope across the country. The session was led by Dr. Mbayo Samuel and Dr. Ayesiga Innocent with great support from Primrose Magala from London. 

Training included awareness and early detection of leukocoria (The Glow) and use of the Arclight device to detect retinoblastoma and other eye diseases. WE C Hope donated the devices and KnowTheGlow supported the team, marking another successful partnership between WE C Hope, KTG, and the Arclight Project.