One of the more distressing effects of the disease is loss of facial muscle control.
In order to work towards a cure him and his family have started the #funnyfacechallenge
Pull a funny face, post it on Twitter or Facebook and get your friends to join in!
Donate £5 for each face by text or just giving.
Text TFFC82 £5 to 70070 or go to www.justgiving.
Thanks for reading and for your funny faces!