Nuestro objetivo es eliminar globalmente la ceguera infantil evitable. Nuestra visión: evitar que los niños pierdan la suya.
Concienciamos a la población sobre el resplandor (leucocoria) y las más de veinte enfermedades oculares diferentes relacionadas con el resplandor, e impulsamos acciones para prevenir la ceguera infantil.
Ayudamos a los padres a ver la visión de sus hijos bajo una nueva luz. Porque ningún niño debería quedarse ciego por una enfermedad ocular evitable.
Know The Glow Ambassadors
Our aim is to eliminate preventable childhood blindness by educating others about “The Glow”. We need “Know the Glow” Ambassadors who will assist us in sharing their experiences with glow related diseases, raising awareness and support for Know the Glow in their communities, and giving generously to support Know the Glow’s global mission.
Carol L. Shields, MD
Dr. Carol Shields completed her residency in ophthalmology at Wills Eye Hospital in Philadelphia in 1987 and subsequently did fellowship training in ocular oncology, oculoplastic surgery, and ophthalmic pathology. She is currently Director of the Oncology Service, Wills Eye Hospital, and Professor of Ophthalmology at Thomas Jefferson University in Philadelphia.
She has authored or coauthored 11 textbooks, 323 chapters in edited textbooks, over 1700 articles in major peer-reviewed journals, given over 850 lectureships, and has received numerous professional awards. The 9 most prestigious awards include:
- The Byron Kanaley Award (1979) given to the top student-athlete at the University of Notre Dame. She was the first woman to receive this award.
- The Donders Award (2003) given by the Netherlands Ophthalmological Society every 5 years to an ophthalmologist worldwide who has contributed extensively to the field of ophthalmology. She was the first woman ever to receive this award.
- Honorary Doctorate of Science Degree from the University of Notre Dame (2005) and the Catholic University (2011) bestowed at the graduation ceremonies from each University. She was the first woman graduate of Notre Dame to receive this award.
- The American Academy of Ophthalmology Life Achievement Honor Award (2011) for significant contributions to the field of ophthalmology.
- Induction into the Academic All-American Hall of Fame (2011) for lifetime success in athleticism and career.
- President of the International Society of Ocular Oncology (2013-2015) – This is the largest international society of clinicians and basic scientists interested in ocular tumors. She was the first elected President of this society.
- President of the Macula Society (2020) – This is the leading society for retina and vitreous doctors in the world. She served as Treasurer (2017), Secretary (2018), Vice President (2019), and President (2020).
- Ophthalmology Power List - Nominated by peers as one of the top 100 leaders in the field of ophthalmology and published in the journal, The Ophthalmologist. There have only been 5“Top 100” power lists in 2014, 2016, 2018, 2020, and 2021 and she was on all four. In 2020, Dr. Carol Shields was listed at #1 in the Ophthalmology Power List.
- The J. Donald M. Gass Lecture of the Retina Society (2019)
Dr. Carol Shields is a member of numerous ocular oncology, pathology, and retina societies and has delivered 57 named lectures in America and abroad. She has been active in the American Academy of Ophthalmology. She serves on the editorial/advisory board of 31 journals including JAMA Ophthalmology, Retina, Ophthalmic Plastic and Reconstructive Surgery, and International Journal of Clinical Oncology.
She practices Ocular Oncology on a full time basis with on the Oncology Service at Wills Eye Hospital. Each year the Oncology Service manages approximately 500 patients with uveal melanoma, 120 patients with retinoblastoma, and numerous other intraocular, orbital, and adnexal tumors from the United States and abroad. She and her husband Jerry are the parents of 7 children, ranging in age from 21 to 33 years.
Christina joined our team in January 2022 after her youngest son Eli lost his eye to advanced Coats’ Disease in September 2021. Christina first noticed the glow in Eli’s eye September 1st and learned the many conditions that could be related to the glow from finding the KTG website. Once her family had arrived on the other side of enucleation, Christina knew she wanted to help raise awareness and help future children from having the same fate that her son had because they had missed the glow for so long. Dr. Carol Shields, Eli’s doctor, had briefly given Christina some information about how Eli was going to go on to live a normal life and to stress the importance of protecting our eyes. This moment changed Christina forever and has opened her mind to endless possibilities in helping as many families as possible.
Christina lives in North Central Pennsylvania with her husband and three sons. She is a Penn State graduate with a BA degree in Organizational Leadership and works full-time in project management consulting at one of the nation's big four Accounting Firms. Christina has a passion for connecting people together and sharing their stories. She has been able to connect KTG with Rochester’s Flaum Eye Institute and has further strengthened our connection with Dr. Carol Shields and her team in Philadelphia. Christina is also very passionate about finding families, sharing their stories, and as many resources as possible. Christina is now spearheading a project called After the Glow, a resource page dedicated to helping families move forward after the glow has been detected. Her passion and energy is infectious and she has quickly become an integral part of our team! We are beyond proud to have her as our Global Family Coordinator and can't wait to see what other new ideas she will bring to help make KTG an even better stronger resource for all our Glow families.
My name is Kellie,
I joined Know The Glow in November 2022, but Know The Glow has been involved in helping us raise awareness through our Bridge to Brisbane Retinoblastoma team for the past 2 years! Know The Glow has also shared my daughter Isabelle’s story, including our Retinoblastoma week video which included Isabelle’s ophthalmologists Dr Jaclyn White and Dr Jayne Camuglia. Dr Camuglia and Dr White also participate in our Bridge to Brisbane team alongside one of Isabelle’s first treating ophthalmologist’s Professor Gole, her ocularist Nick Puls and lots of other Doctors, nurses, allied health, patients, family, teachers, and friends. We are lucky to be surrounded by this fantastic support network who are passionate in helping raise awareness especially my mum and sister!
Isabelle was diagnosed in July 2015 with Bilateral Retinoblastoma at the Queensland children’s hospital, and after 2 years of treatment had her left eye removed in 2017. Isabelle is vision impaired in her remaining eye but is thriving and loving life.
I live in Brisbane, Australia with my partner Troy and 2 children. I would like to continue to raise awareness so more people know the signs to look out for which could hopefully lead to an earlier diagnosis, earlier treatment, and better outcomes for children!
Adele joined our team in November 2022 after her youngest daughter, Mya, lost her eye to Retinoblastoma in May 2015. Adele first noticed the glow in Mya's eye when she was just 6 months old in a photo on her phone. This same eye was also crooked when Mya would look across the room. Adele had no idea of any eye diseases that this glow could be and had her eye checked by a Pediatrician during a routine appointment. The Paediatrician examined Mya's eye and commented that, "her right retina looks more pale than her left." After asking what does that mean, he replied with, "I don't think it's anything alarming however I'll refer Mya to an Ophthalmologist." Two months later, at 8 months of age, Adele & her family received the devastating news that Mya had Retinoblastoma (cancer of the retina). Mya underwent 6 rounds of chemotherapy and multiple treatments of cryotherapy and laser during her monthly examinations under anesthetic. She relapsed, having to go undergo another 2 rounds of chemotherapy, then nearly 2 years to the day of Mya's original diagnosis, a tumor appeared in the iris of her eye and after this EUA more devastating news was delivered that her eye had to be removed, followed by a further 4 rounds of chemo.
Adele lives in Sydney, Australia with her 3 daughters. She is a single Mum building an online business, while studying a Certificate III in Insurance Investigations. She also drives for Uber. Adele has connected KTG with Dr Michael Jones, Paediatric Ophthalmologist, Head of the Dept of Ophthalmology at The Children's Hospital at Westmead and Kerri Wilson, Ocular Prosthetics. Adele is grateful to be a part of KTG Oceania and hopes to add value to the wonderful work being done.
Maree joined the KTG team in late 2022, just over one year after her daughter (Theadora) lost her eye to Retinoblastoma in July 2021. Maree’s husband, Jon, first noticed the glow one evening during a game with their daughter, where he described seeing a ‘white mass behind the pupil’. After googling what he saw, he was led to the ‘Know the Glow’ website, where confronted with the possibilities, both Jon and Maree got out their phones to check all three of their daughters’ eyes for a red eye reflection. When their middle daughter's eye glowed white, they immediately made an appointment for their doctor the very next morning. After receiving the devastating news their daughter had cancer, they made the hard decision to remove the eye, and just over a week later her right eye was enucleated. Maree knew if Jon hadn’t seen the glow that night, their daughter’s outcome might not have been so fortunate, and this is what led her to become an ambassador to help promote awareness around identifying the glow, and also to support families with similar diagnosis or outcomes. In particular, Maree is very passionate about supporting families/ children who have lost their eye, and ways in which to inspire and empower those with prosthetic eyes to own their uniqueness, own their story, and never let it hold them back.
Maree lives in the sunny state of Queensland, Australia, just outside of Brisbane. Her husband was in the Australian Defence Force for 15 years where they traveled and lived in many places around Australia including Newcastle, Wagga Wagga, Perth, Sydney, and now Brisbane. Maree works in the Human Resources field where she uses her university degree combined with her outgoing and personable nature to connect and build relationships with work colleagues, clients, and the community. Maree has a strong social network and enjoys building relationships with those around her. Maree absolutely thrives on human connection. Maree connected with Know the Glow early into her daughter’s diagnosis as she sought a shared experience with other families, and since those early days has remained in contact with both Kara and Megan to continue to share her daughter’s story. Maree hopes to use this platform to connect with other families and provide them with the same understanding and compassion she sought at her daughter's diagnosis, and build a network where they can continue to support each other. Using this platform to connect, inspire and empower these children will not only give them the confidence to own their uniqueness, it will also encourage them to share their stories, create more awareness, and ensure everyone hears about the glow, shares stories about the glow, and KNOWS THE GLOW.
Dhiman Halder is an amazing Ambassador for Know the Glow in Bangladesh. As a professional changemaker, Dhiman has a long track record of working with organizations like BRAC, CARE, and Practical Action to realize the potential of disadvantaged people. Dhiman is the father of a child with a glow-related condition, and he tirelessly advocates for all children struggling to find their way to a proper diagnosis and access to care. He has provided KTG with translations and introductions to doctors and other families with glow-related conditions in his country. We are delighted to work alongside Dhiman to build awareness and we look forward to brighter futures for children in Bangladesh thanks to his efforts.
Jo-Anne joined Know the Glow (KTG) ambassador team in December 2022, wanting to continue her mission of spreading awareness of vision health. She began this journey two years earlier when her son was diagnosed with a rare eye condition known as Coats disease. A large part of this discovery was through her own investigation of taking a photo of Darian with a flash camera. She had noticed a white shiny glow in his left eye after taking his photo. She acted immediately, scheduling an appointment with her eye doctor. This led to a referral to SickKids, and subsequently Darian’s diagnosis of Coats disease. Within three months of this discovery, and advanced stages of the disease, doctors informed the family that the best course of action was to remove Darian’s eye. Since his enucleation, his family trekked forward with the same positive attitude Darian has, always willing to see that through any darkness there is always light. Wanting to help Darian in his journey, Jo-Anne attempted to find a book that featured a diverse character with vision impairment. It became painfully clear there was a market gap in children’s books about or for children with vision impairment. Determined she set out to change this, creating a story inspired by her own child. What emerged was “Adventures with Darian: A Pirate at (Sea) See," the first book in a series about vision impairment. She wanted Darian to see himself as the hero of the story helping others along the way with vision impairment to feel heard and included. Jo-Anne plans to continue her author journey, featuring Darian in all her stories to highlight eye health and promote inclusion into children’s literature. Jo-Anne’s first role is being a great mother to her two beautiful children. When they are not globetrotting around the world, they call Canada home. She has a B.A degree in Psychology and a postgraduate degree in education. She works full-time as a substitute teacher and has a passion for teaching. It's no surprise then that she jumped at the opportunity to join the KTG team, wanting to continue her mission and educate the public of glow-related eye diseases. Her current projects include, and not limited too, supporting KTG awareness campaigns, community outreach, fundraising, facilitating corporate relationships and establishing connections with influencers and support groups that align with KTG’s mission. Jo-Anne is a digital advocate, dedicated to sharing her journey, resources, her children’s book and eye health through social media channels. She hopes that you can join her; Facebook as Children with Monocular Vision – Adventures with Darian, Instagram as Adventures_with_darian, Twitter as with_darian TicTok as adventures_with_darian
Leaving A Legacy:
Ana Sebrek’s one woman crusade to improve healthcare for eye cancers in Croatia began the day her son, Noa, was diagnosed with Coats’ Disease. Coats’ Disease is a very rare eye cancer that many health care professionals don’t often encounter. Ana discovered this herself as her son was only the second patient in Croatia to seek help for her son’s Coats’. Through many sleepless nights, Ana began researching anything that might help her son. She logged onto her facebook page after eight years of inactivity and began reaching out, leading her ultimately to Know The Glow where co-founder Megan Webber assisted her in identifying other resources who might be able to assist her in the region. A referral through KAKS led Ana to an introduction to Dr. Francis Munier in Lausanne, Switzerland.
When speaking with her doctor, Dr. Vukojević, agreed that Switzerland was the best place for Noa’s care. Unfortunately, Ana discovered that the therapy available in Switzerland was quite costly, sending her and her family on a tumultuous journey that left Ana desperate for help. Ana contacted VG Legacy, a volunteer based charity group in Croatia whose goal is to “encourage good deeds and help those who need it most.” Within a week, Ana had connected with VG Legacy, set up an account for Noa’s treatment, and was finding herself in a whirlwind of activity as news of her predicament became known in the Velika Gorica community.
Ana found herself being contacted by local media, sending tv crews to her home and recording her live in studio as well! RTL streamed an interview with Noa and his family. Day after, Ana received a phone call from an anonymous angel who generously donated the funds needed to save Noa’s life. Because of Ana’s unending persistence to help her son, she created a national community of support which later led to the development of a Croatian awareness campaign hoping to help other families find their diagnoses in time. Hoping to put an end to preventable blindness and assist in early identification of pediatric eye cancers Ana began a blog documenting every step of Noa’s journey.
“A little country with a big heart.” That is how Ana Sebrek describes her country, Croatia, after experiencing the generosity from so many sources in helping her son, Noa, get the care he needed for his Coats disease. “A little lady with a warrior spirit” is how we would characterize Ana! Such an advocate for her child and an amazing example of how the world will carry you through…with persistence, faith, and positivity there are no mountains too high to climb. We can’t wait to see what life has in store for little Noa and his family.
In the meantime, Ana has not stopped with the care of her son. She now advocates for other families in the region and works side by side with KnowTheGlow in their international awareness efforts. It has been an honor to have her by our side and together we know that there is nothing we can not accomplish. As our Croatian Ambassador and a Glowing Example of all that makes KnowTheGlow so special in connecting people to resources and highlighting the great work of parent advocates and amazing doctors, we are delighted to shout out our praise for her efforts and hope that her courage will inspire more parents to go the extra mile to keep knocking on doors until they find answers that resonate for their families.
Meet DIVYANI & LARRY WAGH, parents of ABIGAIL WAGH from Pune, India. Abigail, our only daughter was born just 18 days after we lost my father due to failing health and unexplained circumstances. Abigail was diagnosed with Group D Unilateral RB on 23rd May 2020 during the First wave of the COVID 19 pandemic and strict lockdown. Abigail, then a year and half old, underwent 06 cycles of intravenous chemotherapy, Several EUAs, Cryotherapies and MRI Scans under the care of Dr Sangeeta Mudliar at Bai Jerbai Wadia Hospital for Children, Mumbai. Abigail eventually underwent enucleation of her Left Eye on 22nd October 2020 under the care of Dr Himika Gupta at Narayana Health’s SRCC Children’s Hospital, Mumbai. As parents, we have experienced the pain and suffering of not just our daughter but also of those parents of children that did not make it. We are on a mission to ensure that Abigail’s Testimony reaches out to everyone, and which gives them a glimmer of hope and not just save the sight but also save a child’s life. We first interacted with Megan and Team KTG in September 2020 during the WE C HOPE Meeting with Dr Jessy Berry. Being a trained and certified Palliative Care Nurse myself, I perceived that there was a dire need to educate the community and the medical fraternity regarding RB, especially as it goes undetected, often being recognized at the very end. We began Community Awareness with a Radio Program at 94.3 FM Radio One and a Podcast on Something You Wanna Know with Desmond Fernandes. We were able to spread awareness on Retinoblastoma with a Webinar on 13th September 2020 for over a hundred Doctors all over India. We collaborated with KTG on World Sight Day, 8th October 2020 and organized an International Webinar on Eye Cancer Awareness which brought in over 400 Nurses and Optometrists as Participants from all over the world. We teamed up with KTG and began working in Urban and Rural communities on Five Key areas such as Awareness, Screening, Appropriate Referral, White Eye (Leukocoria) Assessment, Low Vision Management and Ocular Prosthesis as Focus Vision 5. Understanding the need of support among survivors and families of children with RB, we started a Support Group and Organized Virtual RB Survivors Meet in India to showcase inspirational stories of RB Survivors, Discuss on Genetic Factors, Counseling, expression of talents and story sessions for children. We have represented ourselves as a panelist in the Global Glow Panel (Retinoblastoma Around the World) at the World Eye Cancer HOPE One Rb World Conference held between 1-3, October 2021.
Even after losing our jobs for Abigail’s Treatment, We have been working tirelessly in India and across International borders in Patient and Parent advocacy towards Eye Diseases in Children. Larry has dedicated his life towards Palliative Care for patients with life-limiting illnesses with the Certification on Good Clinical Practice (GCP), National Trainer on End-of-Life Nursing Education Consortium (ELNEC) Basic and Core. Presently the First Nurse in the State of Maharashtra to pursue Ph.D. in Palliative Care Nursing from Bharati Vidyapeeth (Deemed to be University), Pune.
We are honored to represent INDIA and be part of KTG’s Global Vision, Mission and Purpose with outreach and support. We will diligently continue to spread awareness across the world on glow-related eye diseases and drive action to prevent childhood blindness.
United Kingdom Ambassador
Stacey recently joined KTG as she wanted to help raise more awareness on vision health but also dealing with life after diagnosis.
Stacey noticed something new in her daughter Grace’s right eye just before her first birthday. When Stacey laid Grace down to change her diaper, the light hit just right, and Stacey could see a yellow mass in Grace’s eye. She wanted to believe this mass was just a result of her “squint,” but Stacey’s intuition told her that this was something more. Stacey researched what she saw, and immediately discovered it could be Retinoblastoma. Stacey spoke with her husband about her findings, and he laid Grace down to look. After her husband saw the mass in Grace’s eye, they immediately rushed Grace to the nearest emergency room.
Stacey and her husband saw many different doctors, opticians and ophthalmologists that day. They confirmed seeing a mass in Grace’s eye. Believing that Grace had Retinoblastoma, doctors sent the family to Royal London Hospital. After examining Grace’s eye under anaesthesia, doctors were able to confirm that Grace did not have Retinoblastoma, but rather a rare eye disease called Coats.
Aunque se sintieron aliviados de que Grace no tuviera cáncer, sabían que aún se enfrentaban a un reto desconocido. La enfermedad de Coats es muy rara y no tiene cura. Hay poca información disponible sobre la enfermedad, los tratamientos y el pronóstico. Cada caso es único, y la familia no sabía a qué se enfrentaba.
Stacey lives in Billericay a town close to London with Grace who is now 7 years old and her little brother Hugo who is now 4. She has been studying hard in order to complete her Diploma in Counselling and her goal moving forward is to support families and children through the know the glow platform by being able to reach out and support families post diagnosis.
United States Ambassador
Meet Diane, a devoted stay at home mom with a passion for education and a love for children. Diane received a B.S. in Elementary Education and M.S. in Literacy Studies, both from Hofstra University. With many years of experience as an elementary school teacher, Diane has always committed her time to community and collaboration. More recently, she has wholeheartedly given her time to her family, including her four children aged 23, 21, 18, and 14. She has been involved in every facet of their growth and development and has been their biggest advocate for their ever-changing needs. Recently, Diane joined Know The Glow to help spread awareness for PHPV, the rare glow-related eye disease her son was diagnosed with 18 years ago. With her knowledge and experience, she hopes to be able to support as many families as possible with resources and connections as they navigate their way through the uncertain time that she was once in. In her spare time Diane enjoys staying active by working out and spending quality time with her family. She also enjoys reading, gardening and creative activities. She and her husband of 25 years also enjoy entertaining and taking vacations together. Diane is dedicated to fostering a love of learning in her children. She creates a supportive and inclusive family environment and her passion for serving others is at the heart of all her key accomplishments.