Why was the church purple on Saturday night?
Why was the church purple last night (11th May) ?
11th May was CdLS Awareness Day. CdLS is a rare syndrome (see following paragraphs) and the day was recognised across the Solent by the illumination of Portsmouth’s Spinnaker Tower in purple (the Foundation’s colour). The grandparents of a sufferer live in our parish, and asked if we could simultaneously illuminate the “Parish Church”. We granted their request without hesitation, and those of you who noticed it last night now know the reason for the purple.
Click on the link below for some great photos
What is Cornelia de Lange Syndrome?
Cornelia de Lange syndrome (CdLS) is a rare genetic disorder. It affects between 1 in 10,000 and 1 in 30,000people. People with this syndrome experience a range of physical, cognitive, and medical challenges ranging from mild to severe. The typical features of CdLS include physical and intellectual developmental delays. Most people have limb abnormalities ranging from small hands to missing fingers, hands or forearms.
The CdLS Foundation provides support and guidance to people affected by Cornelia de Lange Syndrome. The foundation receives no government funding and solely relies on fundraising. It is run and managed by a board of volunteers. It holds two family conferences each year where families can see professionals and receive expert advice free of charge while meeting other families. It supports and helps fund research into CdLS and treatment protocols.