sohanaresearchfund.org

BGC Charity Day

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.

Stick out your tongue for EB

Textboard for download – click here (right click image and ‘save image as’)

 

Recessive Dystrophic Epidermolysis Bullosa

HARD TO SAY. HELL TO LIVE WITH.

Sohana has lived with Recessive Dystrophic Epidermolysis Bullosa (“RDEB”) since she was born in 2002.That means she has never known even one day without pain. I cannot imagine what that is like, even though I dress her wounds daily –can you?

She amazes us all with her sunny, positive, humorous outlook on life. Her resilience and fighting spirit are obvious to everyone who has contact with her –but what she dreams of most – is a cure.

There are up to 8000 children and adults living with EB in the UK, 500,000 worldwide. RDEB causes blisters and wounds and is like having very severe burns, foutside and inside, eventually leading to skin cancer. Currently there is no cure but enormous strides have led us to the brink of gene therapy treatments and cures. The Sohana Research Fund is currently funding a gene therapy trial in adults but we need to go even further towards a cure.

Once when Sohana was 7 I asked what she would like for her birthday, she looked me straight in the eye and said

“Mama, you know what I want”

Now on the verge of her 14th birthday we are asking you to “ Stick out your tongue at EB” so that one day soon, Sohana and others with EB can also, have a life free from pain.

Sharmila Collins

Sohana’s mum

(Founder and Trustee SRF)

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

Fight for a Life Free of Pain.

To End EB. Research the Cure.

BGC Charity Day
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