Hello everyone!

Firstly, thanks for taking the time to visit our JustGiving page.

Cornelia de Lange Syndrome (CdLS) is a rare condition that we ourselves were not aware of until working with a fantastic young man called Edward (photographed in our gallery), who has taught us many things about life with CdLS. 

CdLS is categorised by developmental delay, small physical size, limb abnormalities and distinct facial features. There are a number of serious problems that occur in conjunction with CdLS, such as heart abnormalities, gastroeasophagal reflux, deafness and behavioural challenges. 

This year, CdLS awareness day is on 9th May. Under 'usual' circumstances, we would have held a fundraising event at our workplace. However, due to current lockdown arrangements, we have decided to approach things a little differently this year...

If, by 9th May, we have raised:

£100 - Miss Laura Collier will dye her hair purple!
£200 - Miss Sophie Hall will also dye her hair purple!
£300 - Mr Mark Jarvis will also dye his hair purple!

We have chosen 'purple' because it is the CdLS Foundation's representative colour. We will release photos and videos of the hair-dye process and finished result to confirm it has taken place! 

In the mean time, one of Edward's friends, Harrison, would like to support our fundraising efforts by completing 100 laps of his local 'block' on his bike! Harrison is another marvellous young man who has a different rare syndrome, known as CHARGE (an acronym which stands for a cluster of features seen in children with the syndrome: coloboma of the eye, heart defects, atresia of the choanae, retardation of growth and development, and ear abnormalities and deafness). How fantastic to see young people supporting one another in such challenging times - please help us do the same!

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity. 

Every little helps and will be hugely appreciated. Please help us to raise funds and awareness for the CdLS Foundation UK & Ireland. 

Thank you in advance - hope to see you all soon (with, we hope, vibrant purple hair)!

Sophie and Laura