This week, Dr. Orla Galvin Director of Research Policy at Retina International hosts and welcomes Marina Sutter, Interim Chair of the Retina International Youth Council to our latest episode in a series of In-Focus podcasts.
At the age of 12, Marina was diagnosed with an inherited retinal disease (IRD) called Stargardt Disease, a form of Juvenile Macular Degeneration. Although a challenging time for her, Marina remembers fondly the incredible support she received from her teachers and parents, who supported and empowered her throughout her journey. However, through Marina’s involvement and experience in the retina community at large, she is acutely aware that many young people have not had the same positive experiences, with many lacking similarly empowering figures in their lives.
Through her role at Retina International as Interim Chair of the Retina Youth Council, Marina is working to provide comprehensive resources and social supports for young people living with retinal degenerations globally. Additionally, Marina believes this will help to establish a wide-reaching and welcoming community for young people to share their experiences, meet other young people in similar circumstances and realise they are not alone, something Marina regrets to admit she has heard too often from young people in the past.
The full podcast can be listened to by clicking on the link below: