The Cornelia de Lange Syndrome (CdLS) foundation UK and Ireland, with the support of Cork City Hall, are encouraging the nation of Ireland to turn purple to celebrate CdLS Awareness day on Saturday, May 12th, to help raise awareness about the very rare genetic disorder that affects just 40 people in Ireland. One of the families affected lives locally in Belgooly.
CdLs is a genetic disorder that causes a range of physical and medical challenges that can include heart defects, bowel abnormalities, digestive tract problems, cleft palate and hearing loss. The condition can often cause behavioural challenges including self injury and aggression. Physical features of the condition include an unusually small head, a short upturned nose and thin downturned lips. At present, there is very little awareness about the condition that exists at birth but is often misdiagnosed at birth due to lack of awareness and knowledge surrounding the condition even among medical professionals.
The CdLS Foundation in Ireland is run entirely by volunteers and is part of the CdLS World Federation. The main focus of the CdLS Foundation in Ireland is to generate awareness and to educate people about the condition enabling individuals, families, friends and medical professionals to make informed decisions and to plan for the affected persons present and future.
Speaking ahead of CdLS Awareness Day, Eleanor O’Kelly Lynch, coordinator for the charity in Ireland is encouraging the nation to get behind CdLS on May 12th, “We hope everyone will support us on May 12th by wearing an item of purple clothing to help raise awareness about CdLS. The support we have already received from so many people has been amazing and we can’t thank people enough. CdLS is such a rare condition here in Ireland and there is very little awareness about it at the moment. Our main aim is to increase awareness to help those those affected.”
To support the CdLS foundation, Text FRIEND to 50300 to donate €4 - CdLS receives a minimum €3.25 from each text. The helpline is 0766805278. (The Text to Donate facility has been kindly facilitated by Cork Foundation - a unique social enterprise fund that connects with the Cork network globally to support Cork people locally.)
To find out more information about CdLS, please visit www.cdls.org.uk/ or find them on Twitter @CDLSUKIreland and Facebook.
Pictured from Left: Fiona O'Mahony with her son Aaron, Melissa Coleman with her daughters Tabitha and Charlotte and Eleanor O'Kelly-Lynch with her daughter Lauren ahead of CdLS Awareness Day which takes place on May 12th.