About

5 year old Alanna has an ultra rare genetic condition called Fibrodysplasia Ossificans Progressiva or FOP.

FOP is one of the cruellest and most disabling genetic conditions known to medicine. It is a painful illness for which there is no treatment or cure. FOP causes the connective tissues (muscles, ligaments and tendons) to turn to bone, restricting the sufferer's movement. Over time FOP progressively imprisons their body in bone; a healthy mind locked inside a frozen body. 

FOP has already restricted much of the movement in Alanna's neck, shoulders and upper arms. Her left elbow has also recently fused which means she can no longer straighten the arm. Alanna is a happy little girl who certainly doesn't let FOP stop her from doing anything she really wants to do, but there are things she really struggles with and needs help with due to limited movement in her upper body.  We need to find a treatment or cure so that Alanna can continue to live a normal happy life without this terrible disease taking away anymore of her independence or robbing her of the mobility she still has. 

Please join team Alanna in raising funds for research into FOP so that we can find a treatment for her and her FOP Friends.