Major landmarks to light up for OCNDS
Kirsty, 12, among those with rare genetic condition
Well-known monuments around the world will be lit up this week to raise awareness of a rare genetic syndrome.
First discovered in 2016, Okur-Chung neurodevelopmental syndrome (OCNDS) is caused by a change on the CSNK2A1 gene, situated in chromosome 20.
So far, only 240 people have been diagnosed with the syndrome globally and about 10 per cent of those are in the UK and Ireland.
Among those is 12-year-old Kirsty Whitehill from Windsor who was diagnosed in 2019 at the age of eight after being put forward for the 100,000 Genomes Project, announced in 2012 by former Prime Minister David Cameron.
Symptoms of the syndrome include speech delay, global developmental delay, behavioural difficulties, feeding issues, epilepsy, and autism.
For the third year, as part of CSNK2A1 Foundation’s annual International OCNDS Awareness Day, taking place today (Friday), monuments across the UK, USA, and Canada will be lit up to shine a light on the syndrome.
Kirsty’s mum Claire Whitehill said: “The aim is to raise awareness about the condition itself and also to shine a light on rare disease in general.”
A total of 18 monuments will be lit up this year including Tower 42 in London, Meadowhall Shopping Centre in Sheffield, Gateshead Millennium Bridge, Liverpool Town Hall, Newcastle Civic Centre, OVO Hydro in Glasgow, Glasgow Central Station, Niagara Falls, and the Skydance Bridge in Oklahoma.
Claire added: “I think it’s very important to raise awareness of rare disease because so many people don’t know about it and because it is so rare, when we tell people what it is, they generally haven’t heard of it.
“One of the symptoms is autism, which is something that most people have heard of.
“So I think it is good to mark the occasion just to remind people about it, but also, just to shine a light on rare disease in general.”
People are also being encouraged to dress in green and blue and take a photo of themselves and post it onto social media, tagging @csnk2a1_foundation on Instagram, CSNK2A1 Foundation on Facebook, @csnk2a1org on X (formerly Twitter) and using the hashtags #OCNDS, #CSNK2A1 #MoveIntoAction.
“Last year my aunt in Wales lit her house and her neighbour’s house green and blue, so that was quite nice because it had the personal touch,” Claire added..
For more information, visit: csnk2a1foundation.org/