Thank you to all those that travelled to attend our vigil yesterday outside NICE in Manchester.
As well as being very cold and windy it was very emotional and overwhelming as well. The patient experts speaking inside could not have represented us better as a community. The clinicians also spoke with nothing but passion for the UK SMA population and fought our corner hard.
The Chair of the NICE committee that discussed Spinraza yesterday came down and introduced himself to those outside, so our presence was acknowledged and felt. The children were amazing.
Please see pictures of the day attached.
Thank you everyone.