Emma Watson recently tweeted a message about EB to her 15 million followers in support of Sohana Collins, a twelve year old who was born with EB.
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.”
Sohana Collins was born with Recessive Dystrophic EB – a particularly severe form of EB which gets progressively worse as she gets older. Although she lives with extreme pain every day, she has always been uncomplaining about her condition, with a great sense of fun.
The Sohana Research Fund was set up in 2010 by Sohana’s parents and is dedicated to finding effective treatments and a cure for Recessive Dystrophic Epidermolysis Bullosa.
They have come up with a brilliant way of raising money this December and that is the EB Tongue Twister. The idea is you pick a tongue twister and film yourself saying it as fast as you can. If you laugh or smile while saying it you have to donate.
Sohana’s message reached Emma Watson who got behind the campaign and tweeted a message of support to Sohana and all those living with EB.