Team CRB1 secures new research project thanks to incredible fundraising feat
Leber’s Congenital Amaurosis (LCA) is a rare hereditary eye condition affecting two or three people in every 100,000. It affects the photographic plate at the back of the eye, meaning images aren’t sent to the brain properly. Currently, there’s no cure.
In 2018, three-month-old Minnie was diagnosed with LCA, caused by a mutation in her CRB1 gene. Her parents Caroline and Mark decided to start Minnie’s Miracle Fund to raise as much money as possible to fund research into the condition.
Mum Caroline said:
“Receiving Minnie’s diagnosis was devastating. It felt really huge and life changing; we felt so sad. Working with Fight for Sight has given us real hope. It’s given us the opportunity to raise money and awareness to help Minnie and all sufferers of LCA”
After raising an incredible £30,000 by January 2021, and understanding more about the significance of the CRB1 genetic link, Caroline and Mark wanted to take their fundraising to the next level. They sought out and welcomed the families of five other children also affected by CRB1 gene-related eye conditions.
Now, they make up Team CRB1, a network of families working together, supporting each other and raising vital funds for potentially life-changing research that could lead to new treatments or possibly a cure.
Thanks to their incredible fundraising, which has raised over £88,000 and counting, Team CRB1 have been instrumental in a new jointly funded research project between Fight for Sight and Moorfields Eye Charity.
The families now look set to make an even bigger impact on the lives of people living with sight loss.
Caroline said: “Vital research needs to happen now to help preserve and prevent deterioration of the limited sight of our kids and family members. Our aim is raising funds and awareness to help give our little ones a future they can actually see as well as live, feel, smell and touch.”
Team CRB1 member Matt is taking on the extreme challenge of running six marathons in six months, one for each child affected by sight loss in the group.
“My daughter Mollie is affected by this eye condition and I want to do all I can to help raise awareness and funds towards a cure for these kids. Running six marathons won’t be easy, not when my diet consists of bagels, chocolate and cider!”