Baroque Concert Fundraiser – 12th May 2016
Book Tickets Now ⇢
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Text the word SOHANA to 70500 to give £5
to the Sohana Research Fund (Registered charity 1158672)
100% of your donation goes to the charity. You may also be charged for one standard rate message. Always get the bill payers permission. Service provider Vir2 text helpline: 033 0660 0425 Sohana Research Fund will not sell your mobile number to anyone. We would like to send you the occasional text message about our progress in finding a cure. Add the words NO INFO at the end of your message (e.g. SOHANA NO INFO) if you don’t want to be contacted again.
Sohana’s Tongue Twister Challenge ⇢
HARD TO SAY.
HELL TO LIVE WITH.
A Message from Sohana
“I’m Sohana. I like singing, writing stories and poems and lots of other fun things. I’m 12 and I want to be an author when I grow up.
I love the #EBtonguetwister challenge! It’s so funny to watch people trying to say tongue twisters without starting to laugh or getting cross with themselves.
I have Epidermolysis Bullosa. Words that are hard to say and even harder to live with. Imagine your skin is covered with painful burns that don’t heal. That’s what EB feels like.
It’s not just me. There are 8,000 children and adults in the UK who have EB. Some of us will go on to develop skin cancers because our skin doesn’t work properly.
There’s no cure, but I’ve met lots of scientists who are working to find one. Their research costs money, so some grown-ups who know me and others like me -including my mum and dad -set up the Sohana Research Fund.
Please make me laugh by taking on the EB tongue twister challenge and help the researchers stop the pain of EB”
“ There is only one thing in my life that I hate and that is EB. I have never had a day with no pain and it is almost torture to watch people do things that I know I can’t ”
Take your skin for granted? Read on to find out about the little known condition with the long name