Nuestra visión

Nuestro objetivo es eliminar globalmente la ceguera infantil evitable. Nuestra visión: evitar que los niños pierdan la suya.

Nuestra misión

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.

Nuestro objetivo

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.

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.

Kellie Perren 
Australian Ambassador

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 Sargent 
Australian Ambassador

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 Smith
Australian Ambassador

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 
Bangladesh Ambassador

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 Longtin
Canada Ambassador

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

Carla Soto Vargas
Chile Ambassador

Carla recently joined KTG, after being contacted in June 2023 by one of KTG’s ambassadors after hearing her story at an international congress evidencing childhood cancer survivorship. Carla is an only child and lives with her parents in a town in Chile located between the hills bordering Argentina, called Cajón del Maipo. She was diagnosed with Retinoblastoma when she was four years old, thanks to her mother realizing one day playing with her that she had strabismus in her right eye and at the same time she noticed a glow at the bottom of Carla’s eye that did not disappear with the change of light in the environment. As a result of the loss of her eyeball and not having the possibility of using a prosthesis due to the physical damage caused to her socket, she grew up surrounded by social stigma due to its physical difference and causing emotional distress due to the impact of discrimination.

Despite this, thanks to the love and support of her parents, she has always been able to move directly forward and accomplish every goal she sets for herself. Among her childhood goals was Carla’s wish to be able to raise awareness in society about childhood cancer and mainly about her disease, retinoblastoma, so that children and their families would have the necessary tools to move forward after diagnosis. The road to achieving this goal has been quite difficult. There have been many ups and downs, but at the age of twenty-nine, her life changed again when she was diagnosed with a brain tumor as a consequence of the treatments she received as a child. After recovering from this experience, she decided that it was time to raise her voice and began to seek help from organizations of people who had childhood cancer outside her country to learn from others, acquire new strategies and then begin to create something in her country. This she has achieved very successfully, thanks to finding people living in Chile who also want the same thing.

Since April 2022, Carla has been one of the founders of the National Network of People Cured of Childhood Cancer in Chile, Luz de Esperanza. Carla is in charge of coordinating and directing awareness, education and support activities related to the issue. Thanks to her efforts, today she has the opportunity to be the voice of all children who are going through retinoblastoma treatment, and in turn to warn society about this and other eye diseases that they may acquire in childhood.

Carla is delighted to be joining the KTG list of Ambassadors and looks forward to working alongside the KTG team and building awareness in her country.  KTG could not be more proud to have her working with us to build awareness, as well as to highlight and guide more doctors, families, and NGOs within Chile and in the surrounding region.

Ana Sebrek 
Croatia Ambassador

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.

Larry Wagh
India Ambassador

Meet Larry Wagh, father of Abigail Wagh from Pune, India. Abigail, my 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. I 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.

Larry has 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.

Grace Mbugua
Kenya Ambassador

Grace joined Know the Glow in September 2023 after meeting with Megan Webber at ISOO AFRICA 2023 Conference in Kenya after learning of the great work KTG is doing to create awareness and prevent blindness. Grace is the mother to Christian who after she noticed a white glow in her son's left eye in 2013. After consulting the doctor, a retinoblastoma diagnosis was made and a journey of RB treatment began including enucleation,chemotherapy and radiotherapy. The treatment took a toll on her psychological health and after receiving the help she needed, she then promised to be there for others going through cancer treatment. 

Grace lives in Kenya,Kiambu County with her loving family who were her greatest source of strength during her son's tough treatment journey. She is a registered nurse by profession, who enjoys helping her patients and is passionate about being there for families fighting childhood cancers,  sharing stories, information and advice as a way of offering psychological support during and after treatment. Grace formed Victorious Children Cancer Support CBO where parents and caregivers of children diagnosed with various cancers connect via WhatsApp and share their experiences, encouraging newly diagnosed parents through testimonials of families that have fought cancer and are now living healthy and happy lives.

Judith Mollel
Tanzania Ambassador

Judith Mollel was born and raised in the Northern part of Tanzania, Arusha Region, in the Maasai Society. She earned her Bachelor’s Degree in Economics from St. Augustine University of Tanzania in 2013 and later earned her MBA in Corporate Management from Mzumbe University in 2017. Judith got into business in 2014 and is currently working as a Business Development, Tender and Marketing Officer.

Miss Mollel is a mother of two boys, Abelardo and Alexander. In the year 2020, she attended the

hospital when her first son Abelardo was facing eye health problems; she attended several hospitals before it was determined to be Coats Disease. During her son’s treatment journey, she was so touched by the rate of children that had eye disease, children who went through so much difficulty and pain, losing life, losing a single eye and being blind at an early age. She assists in accessing treatment easily, especially those in remote areas and teaches how to overcome these diseases to save lives and the sight of children. She has worked tirelessly to raise awareness, public speaking, volunteering work about childhood eye diseases and ensuring that parents and healthcare professionals are well-informed about the importance of regular eye exams for children and the importance of early detection for accessible eye care services for

children.

Through the Judith Mollel Foundation, she has made a mission to ensure that children everywhere have the opportunity to see the world with clarity; she possesses a deep understanding of the challenges faced by blind communities, especially in Tanzania, where most of these blind children are considered helpless and are kept indoors and cannot attend school. In the future, Judith intends to improve blind children’s community lives by creating a conducive environment for them and giving them academic opportunities to make a meaningful difference in their world and make professionals out of a special group of our superhero babies who have lost both eyes.

Judith Mollel is a symbol of hope for children facing eye diseases. Her unwavering commitment offers a beacon of light for the future of children’s eye health, to create a world where all children have the opportunity to see, learn, and thrive.

Stacy Brown
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. 

Diane Zizzadoro
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.