EB Awareness Week

This weeks sees EB Awareness week. And to celebrate Sohana's Pride of Britain award and to mark the beginning of EB Week - The Sohana Research Fund put on a fabulous fun day on Sunday in Camden which myself and my two daughters had the pleasure in attending.  It was a delight to meet Sohanas Mother Sharmilla and of course Sohana too, along with many other children who suffer with this terribly painful skin condition.  EB Stands for (and I still have problems saying it) Epidermolysis Bullosa.  EB can only be described as extremely sore burns that don't heal and there are over 8000 adults and children that suffer with this condition in the UK - 

The Fun Day was held in a North London hotel and had a halloween theme to it - my girls loved making halloween decorations and we have lots now to use at our party on Saturday so thanks so much to Sharmilla for the wonderful time we all had.   It was a delight to see such happy children running around, making and creating some fantastic halloween things with the help of Sharky and George who create wonderful children parties!  On the way home on the train my older daughter Grace who is 11, said that she loved making the pot of slime!  well of course she would because it makes a very rude noise too LOL.......  

The Sohana Research fund is a charity that are looking to find a cure for EB at the moment there is no cure but we are hopeful that one day they will find one and you can help NOW

I am sure many of you have seen the Tongue Twister Challenge that Damian Lewis has done and many other celebrities and of course my little Dani too - you can have fun and help this amazing charity - go to www.sohanaresearchfund.org and follow Sohana's Tongue Twister Challenge