The Roberts Family Fund

The Roberts family is raising money for their daughter Rose’s eye condition, Stargardt disease. This is their story.

Mark and Tina Roberts are the proud parents of Rose Roberts (19), who was diagnosed with Stargardt disease when she was 7 years’ old.

Stargardt disease, or Stargardt macular dystrophy, is a genetic eye condition that causes progressive central sight loss. It is estimated to affect between one in 8,000 to 10,000 people in the UK and is a consequence of progressive damage to the macula - a small area in the centre of the retina, the specialised light-sensitive layer that lines the back of the eye. The macula is responsible for our sharp, straight-ahead vision that we rely on for many activities – such as reading, recognising faces or watching TV. Currently there is no cure.

Since being diagnosed, Rose has experienced progressive vision loss and now has difficultly recognising faces from a distance. Her schoolwork has to be adapted and sadly she will never be able to drive.

On receiving Rose’s diagnosis, the family didn’t know anything about the condition or anyone who had it, until they were introduced to Fight for Sight and learnt about the research that Fight for Sight was funding.

Rose’s father, Mark, said:

“While some things are a little tricky for Rose, she is nonetheless a fun loving 15 year-old, still managing to do the things that her friends and peers can do. This is down to Rose’s determination and the love and support she is surrounded by, which extends far beyond her family. We’ve decided to fundraise for Fight for Sight to raise money for research into a treatment for Rose’s condition.

“The charity is already funding research into several inherited retinal conditions including Stargarts, for example, to better understand the underlying genetic changes in inherited conditions as well as how stem cells could be used to replace damaged photoreceptors. There has already been much progress, but there is more to be done.”

The Roberts fundraising activities highlight to date have included the Brighton Marathon, Ball, Cake Sales, Afternoon Tea, 1/2 marathon, along with support from Rose’s dance school and so many more fundraising activities.

If you would like to support the Roberts Family Fund, please contact: tinaandrose@gmail.com