A reflection from Team KTG

Sharing stories in the countries we target is a tremendous way to build local awareness and highlight these brave little ones battling unimaginable odds. Highlighting their journeys and featuring the doctors, families and local resources supporting them is a big part of our campaign. Stories from around the world like Poppy’s, Diaz’, and Emerson’s allow us to shine the light on families in countries we are targeting, revisit families who we haven’t spoken with in years, and simultaneously feature children sharing their journeys right here in the U.S. Ours is a global perspective of children helping children through shared stories.

While the campaign in Spain is ongoing, there is no way to discuss this awareness initiative without mentioning Carme Ferré and Dr. Jaume Català! Both individuals have been tremendously supportive and influential in guiding KTG Global Outreach Director Helene Dameris and Co-Founder Megan Webber through the country’s long list of impressive NGOs, doctors, researchers and patient families. With their help KTG continues to feature a multitude of inspirational individuals and organizations making a big difference in the lives of children facing glow-related pediatric blindness.

Our university programs are continuing to develop. Notre Dame has invited KTG to return, to speak about the impact that ND interns have had on the program (which will be hard to put into words). We have seven Notre Dame interns working with us this year. Two of them are ND graduates who will be staying involved with our global outreach as they prepare for graduate school! We are excited to welcome a Santa Clara University intern again this summer from their communications department, and our Manila Central University Chapter in the Philippines now boasts 45 students in its KTG chapter! Notre Dame and MCU have created their own dedicated Facebook pages tied to the KTG Facebook channel. The KTG MCU Chapter in Manila recently ran a seminar for 4th to 6th grade students titled "Now Eye Know The Glow" creating a whole new batch of Glow Detectives. Attended by students and parents, they learned what the glow is, how to watch for it, and what to do if they find it! To see a one-minute video showcasing their work watch here! We continue to be amazed by the ideas and energy these students bring to all that we do.

Hillary Yaeger-Davis, an amazing ocularist with incredible vision, has helped introduce us to the inspirational Jarrett Stod, who has taken YouTube by storm. Hillary went out of her way to create a special KTG-inspired prosthetic eye for Jarrett, which has our logo embedded in gold AND glows in the dark! Jarrett kindly showcased the announcement of his special eye with a video that has been seen by nearly one million viewers! We are beyond grateful for the continued awareness Jarrett provides.

Hillary has also developed and fabricated The Ocular Octopus, an incredibly creative, educational, stuffed octopus with removable eyes. What a wonderful way for children to become more comfortable with their own removable prosthesis, and to show others how to be comfortable with the concept themselves! Children featured in KTG stories who have lost an eye to glow-related eye disease will be sent this fun yellow octopus and its accompanying book in the name of another KTG-highlighted child. This gift program provides a physical reminder of how one person’s story can lead the way for an infinite number of future Glow families. The Ocular Octopus is a perfect example of children helping children…one child (and one octopus) at a time. Read more about this program here, and watch our video of children receiving and sending octopi around the world: https://knowtheglow.org/ocular-octopus-program-announcement/

Canadian ambassador, teacher, author, and mom Jo-Anne Longtin is the creator of an adventurous book about a one-eyed pirate at SEE and a phenomenal new addition to the KTG team! Jo-Anne has already made a dramatic impact on KTG, helping us with work in Canada, introducing us to movers and shakers in the world of social media influencers, and promoting KTG with giveaways of her darling book. A Pirate at SEE includes a dedication to KTG and is available on Amazon. We love the book’s reminder to see our differences as special gifts and life as a continued adventure!

As social media messaging expands it’s been a delight to find and feature inspiring influencers. In addition to Jarrett Stod and One-Eyed and Wonderful Rachel MacKenzlee, KTG has recently spotlighted the reach of several social media influencers who are changing the experience and mindset for children with monocular vision. Recent features include the creative LED prostheses developed by Brian Stanley, the support and outreach for the One-Eyed Gang inspired by Shelby Perry, ocularists developing “Fun Eyes” alongside Rachel MacKenzlee, Christina King, and 1iCollective founder Nav Dhillon.

If you come across a GLOWing influencer you think we should know about, please tag KnowTheGlow and reach out to us. We’d love to feature their efforts!

Beyond The Glow was created for families because their journey doesn’t end with detecting the glow and getting treatment, but can often become a life of learning to live with an eye condition. Christina Gill recognized there was a need for extra resources for families, especially children who were not yet able to communicate. Having a toddler who cannot fully articulate his needs sparked the idea of a single page directing those in need to different resources available for families. Get involved here: https://knowtheglow.org/beyond-the-glow/

Sandra Staffieri, retinoblastoma care co-ordinator at the Royal Children’s Hospital in Melbourne and research fellow at the Centre for Eye Research Australia, knows how dangerous late diagnosis can be for children with retinoblastoma.

As part of a two-day childhood cancer training workshop in Port Moresby, Papua New Guinea (PNG), Sandra gave a two-hour presentation to doctors and nurses from various regions around PNG. Sandra shared information about retinoblastoma and early diagnosis, and KTG worked with her to develop posters for attendees to display in their community centers, clinics, and hospitals. Sandra was beyond pleased with their interest and enthusiasm about sharing the health message in their communities! Even the three chaplains in attendance were keen to display posters in their churches and local shopping centers.

We are thrilled to announce that seven new ambassadors recently joined our mission. Plus, two additional ambassadors from the UK will soon be featured, bringing our total to nine global ambassadors. As KTG shares glow awareness in new countries, having strong ambassadors in each country allows us to continue this meaningful conversation with local families, doctors, and NGOs. It’s an honor to have our ambassadors continue to share the message of awareness and be the voice of KTG in their community.

KTG strives to promote collaborative advocacy, working together with nonprofits and agencies around the world to highlight newsworthy and important information about early detection of blinding childhood conditions. These partnerships better serve the children of today and the parents of tomorrow by educating them about The Glow. We are proud to be members of the International Agency for the Prevention of Blindness (IAPB) and to announce our 20 international partners.

New partners include EyeHesive, and 1iCollective. Both of these organizations seek to build support and resources for those living with monocular vision due to glow-related or other blinding diseases or injuries. These groups are part of a growing list of inspirational influencers changing the experience of living with the loss of an eye for individuals across the nation and the world! EyeHesive recently offered a EyeConnect Workshop, bringing together more than 50 individuals from around the world to tackle the challenges of life with monocular vision. EyeHesive and groups like it are taking yet another giant step forward in embracing their unique journeys, finding even more ways to guide others to a healthy and proud place of confidence and contentment post-diagnosis.

TanZanEye carries out humanitarian development projects and promotes eye care and blindness prevention through improved education, primary care and infrastructure development. The association exclusively and directly pursues non-profit and charitable purposes. TanZanEye is a project in Tanzania focused on the prevention of avoidable blindness by providing vision care and vision health information in the underserved and remote regions within western Tanzania.

As KTG prepares for our next exciting campaign targeting Kenya, watch for updates and stories about the individuals doing great work to support children and families in that region. KTG is proud to be one of the event sponsors of the ISOO Conference in Kenya this August, which will gather doctors from around the world to share ideas and knowledge. KTG co-founder Megan Webber will be there, and looks forward to connecting in person with other attendees. She also plans to lend support to CHLA’s Dr. Jesse Berry, who is scheduled to lead multiple sessions.

As our team continues to grow, so does our need for support! If you’d like to get involved with KTG, donate to our outreach efforts, or refer others our way, we welcome and value your input.

Email info@knowtheglow.org if you would like to help. We need your ideas, your stories, and, as always, your support!

With gratitude,
Megan, Sandra, Helene, and the Know The Glow Board

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