Sohana, a 12 year old girl with Recessive Dystrophic epidermolysis bullosa (EB), a skin condition which can ultimately turn into malignant cancer, killing sufferers in their thirties if not earlier, is asking you to have some fun with her by taking part in her tongue twister challenge:
“It’s so hard to say ‘Recessive Dystrophic Epidermolysis Bullosa’ and we thought it would be funny if people tried to say that and also a tongue twister. It’s really difficult not to laugh! People seem to be having lots of fun with it and it would be lovely if over the Christmas Holidays, whole families got together and did tongue twisters and then maybe nominate their friends and neighbours to do one too! We would definitely raise lots of awareness and hopefully money -and then one day -children like me will have a chance of a day without pain –the best Christmas present I could ever have“
Here is Sohana doing the challenge:
She nominated Damien Lewis to do the challenge..
Sohana’s mum started The Sohana Research Fund, a small charity working to find a cure for epidermolysis bullosa. This incredible article in the Guardian explains why she started the charity, the challenges they face, and the journey they have been on as a family.
Help make Sohana’s dream come true by getting involved in the EB tongue twister challenge today:
1. Choose a tongue twister from this list: www.sohanaresearchfund.org/tongue-twisters
2. Film you / your family doing the tongue twister challenge
3. Nominate 3 friends to do the challenge
4. Share your tongue twister challenge on Twitter and / or Facebook using the hashtag #EBtonguetwister
5. Donate £5 to the Sohana Research Fund by texting TONG14 £5 to 70070
For more information on The Sohana Research Fund please visit their website: www.sohanaresearchfund.org
