Ben runs his first 5K for CASK

 On Saturday, Ben (Willow Class) will be taking part in the Cheltenham Parkrun as part of the CASK “Race for Research”. A 5km fun run with friends and family to help raise awareness and vital funds for scientific research into the CASK gene disorders for CASK Gene Awareness Day, which is celebrated globally on 15 July. Ben’s little sister Ailla was born with an ultra-rare genetic mutation in her CASK gene, resulting in an even more rare neurological disorder called MICPCH. There are less than 300 cases worldwide! In simple terms, this caused Ailla’s brain to not develop or grow properly, resulting in severe intellectual disability, visual impairments, sleep disorder, development delay, challenges in both her gross and fine motor skills, autism and a lack of communication (non-verbal). Many of the CASK community also suffer the most severe forms of epilepsy and never go on to walk, which means their lives are significantly limited.

Ben is an incredibly caring big brother to Ailla, and dreams of raising enough money to help find a cure for his sister. The CASK Race for Research is an international campaign created to raise funds to do just that. We have a target of £1.5m to reach to fund research into gene therapy at a US University, which is a huge target to meet. If anyone would like to show Ben their support and sponsor Ben by donating a few pennies to his fundraiser, I know you’d make him very happy! You can donate any amount (click “other”) at the following link or just read about the campaign if you’d like to find out more. Thank you. 

https://cask-race-for-research-uk.raisely.com/emily-richards