Lowe Syndrome & Me
Lowe syndrome is a rare genetic condition that presents unique challenges, encompassing various medical complications, physical and cognitive disabilities, and developmental delays.
In this video series we explore three perspectives from different groups within the Lowe syndrome community.
Families
What is it like caring for a loved one with a rare genetic condition?
Four families of boys with Lowe syndrome share their experiences as advocates for their children and shed light on the complexities of their diagnoses as well as their hopes that their boys will grow and thrive despite the challenges they face.
The families hope that by sharing their stories, they can help people to better understand Lowe syndrome and ultimately work together to find a cure in the future.
Researchers
What does it mean to study a rare genetic condition in the lab?
Researchers in Jenny Gallop’s lab at the University of Cambridge share their experiences as scientists trying to better understand the mechanisms of Lowe syndrome and how they might be able to work towards future therapies and treatments.
Patient Advocacy Groups
How are patient advocacy groups able to bring communities or patients, families, caregivers, researchers and funders together to raise awareness, provide support and fund research into a rare genetic condition?
In this video, they share their mission to provide resources, share experiences, and advocate for effective medical services for everyone who is affected by Lowe syndrome.
All of the videos in the series were co-created by the participants who captured the footage, created the storyboard and script and recorded the narration. The participants were mentored by filmmaker Ryd Cook and the videos were edited by Mariana Vaz.
The Lowe Syndrome & Me series is a collaboration between the Lowe Syndrome Association and Jenny Gallop’s lab at the Gurdon Institute.