I am the charity manager of the Noonan Syndrome Association.

I have worked part time for NSA since 2011 after helping to set up and then run the United Kingdom Youth Parliament and its charity, which was the culmination of a career in the public service, mostly in the education sphere. Although I do not have any family connection with Noonans, I have very quickly become immersed and committed to the Noonan Syndrome community.

As our late and much missed trustee Don Andrew once said to me “once you’re involved, there’s no escape!”