Windsor family calls for people to join event fundraising for rare genetic syndrome

The family of a girl with a rare genetic syndrome is calling for people to join them in Hyde Park next month at an event to raise funds and awareness about her condition.

Claire Whitehill’s 12-year-old daughter Kirsty was diagnosed with Okur-Chung neurodevelopmental syndrome (OCNDS) in 2019, at the age of eight.

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

Claire explained that in the UK more than 25 people are believed to be living with OCNDS, while globally 220 people have been diagnosed.

Common symptoms include learning disabilities, short stature, autism, speech delay and epilepsy. After lighting up high profile monuments across the UK in April to raise awareness of the syndrome, the San Francisco-based charity CSNK2A1 Foundation has now organised a Forward Together event next month.

It calls for people to run, walk or roll for 5km or one mile. The date of the national event is the weekend of October 14-15, but Kirsty’s family are holding their’s on Sunday, October 22 in Hyde Park. Participants will start at midday and do a 5km loop around Hyde Park, past sites including Princess Diana’s memorial, before finishing up at the children’s playground.

Claire said: “It is an important fundraiser. I think [the thing] of most importance is to raise awareness. So it’s not so much the money that comes out of it.

“But what it does is it raises awareness because all of our families and friends put it on their social media pages and share it, and we get a lot of social media interest for it, and it gets a lot of hits.”

The CSNK2A1 Foundation has many overarching goals, including funding research to find treatments and a cure for OCNDS, raising awareness of the syndrome and supporting families.

Those wishing to join in with the event can find more details of how to sign up and the pricing on the website at: www.runsignup.com/Race/CA/Anywhere/CSNK2A1Foundation

Those wanting to join Kirsty and her family in Hyde Park are welcome to just turn up on the day.

To view Kirsty’s Crews’s fundraiser on her JustGiving page, visit: https://runsignup.com/Race/117206/Donate/XOGwe3id1k88lEcH