Windsor family to take on sponsored walk to raise funds into research for rare genetic syndrome

A sponsored walk looking to raise awareness and funds for a rare genetic syndrome is set to return to Windsor Great Park for the third time.

Windsor resident Claire Whitehill and her family will be taking on the sponsored walk this Sunday as part of the CSNK2A1 Foundation’s global Boundless Possibilities Run, Walk and Roll event, taking place across Saturday, October 11 and Sunday, October 12.

The event brings together researchers, clinicians, families and friends to raise awareness and funds into research for Okur-Chung Neurodevelopmental Syndrome (OCNDS).

The syndrome was first discovered in 2016 and is caused by a change on the CSNK2A1 gene, located in chromosome 20.

Some of its common symptoms include speech delay or an inability to speak, autism traits, learning disabilities, short statute, feeding difficulties and cognitive impairment.

Claire’s daughter Kirsty, 14, was first diagnosed in 2018 after being put forward for the 100,000 Genomes Project, which was announced by former Prime Minister David Cameron in 2012.

Claire said: “This event means so much to us because every step we take together opens new doors – advancing research, supporting families, and showing up for one another.

“With hope and science as our compass the possibilities are endless.”

The Kirsty’s Team fundraiser can be viewed at: https://runsignup.com/Race/117206/Donate/vooBzy8m8z9zUtkQ