In a letter dated 18/12/2018, the Managing Director of this charity stated: ‘… regarding our position on human embryo experimentation. To date we have not funded any work on treatments for SMA relating to this field of scientific research…If a project of this type was tabled ultimately even if the scientific board supported it, the Trustees board of my charity would be given final vote by me as I am clear that this is a very new and ultimately ethically difficult area for the charity to enter into.

‘So what I am saying is no we haven’t funded this line of work and no we don’t know of any projects working on SMA in this field and hence are not knowingly supporting other organisations in this type of research.’