In a recent interview with David Sanchez, the President of Retina Murcia, Megan Webber, Co-Founder of KTG, gained valuable insights into the world of retinal conditions and the significant role a KTG campaign could play in awareness in Spain. Despite living with a visual impairment, David’s determination to raise awareness and support individuals with retinal conditions is unwavering. David was eager to share his journey, the importance of early diagnosis, the role of organizations like Retina Murcia, and the potential impact of the KTG campaign within his amazing country.
David hails from Barcelona but currently resides in Murcia, located in southeastern Spain. He was diagnosed with Retina Pigmentosa (RP) in his early twenties, a condition characterized by the progressive deterioration of the retina. Living with RP for the past ten years, David understands firsthand the challenges and uncertainties accompanying such a diagnosis. He emphasizes that the progression and severity of RP can vary depending on genetics, with the condition becoming more aggressive during the 30s. However, there is hope on the horizon, as David is scheduled to receive the innovative Luxturna treatment—a groundbreaking gene therapy that was approved by the U.S. Food and Drug Administration (FDA) at the end of 2017 and subsequently approved in Spain in 2021.
Retina Murcia, focused initially on Retinitis Pigmentosa in the late 1990s, now recognizes the interconnectedness of various retinal conditions. David emphasizes the crucial role of early awareness in diagnosing and treating retinal conditions, particularly in children. They now address a more comprehensive range of conditions, including inherited retinal dystrophies (IRDs) and age-related macular degeneration (AMD). Despite the differences, their advocacy efforts are unified by the shared outcome of vision loss and eventual blindness. David emphasizes the importance of assistive tools and resources in enhancing the lives of individuals with retinal conditions, highlighting the common challenges faced by those with Retinopathy of Prematurity (ROP) and other conditions.
Retina Murcia places great importance on early diagnosis and the education of parents and children on how to maintain retinal health. Encouraging healthy habits such as protecting their eyes from sunlight, refraining from smoking and alcohol consumption, and fostering overall retinal well-being are vital priorities. David aims to engage young people in their organization through cultural and recreational activities, creating opportunities to connect with others in their respective regions of Spain and establish links with Retina International. Additionally, Retina Murcia supports research and is part of a national federation called FARPE that has its foundation to fight blindness called FUNDALUCE. These foundations provide substantial grants to researchers studying retinal conditions, facilitating progress and advancements in the field.
Awareness among parents and families is only part of the solution. David emphasized to Megan the importance of educating doctors, opticians, and nurses about retinal conditions to enable early detection and intervention. By equipping healthcare professionals with the necessary knowledge, it becomes possible to identify potential issues during routine screenings, particularly in children. Megan agreed with David and is hopeful that the KTG campaign aligns with this objective, educating healthcare providers and empowering parents to seek timely medical attention when the glow is detected.