Posted on 1st February 2020 by ns_admin


The Noonan Syndrome Association, UK board held its usual start of year board meeting in Birmingham on Saturday. We reviewed the position of the charity and it was good to see that the finances we have will enable us to continue with the work plan we have set for 2020. Our Treasurer Steve quite rightly wants us all to keep focused to keep the fundraising going well as we have identified areas to explore and it is extremely important to us to use every penny we raise wisely. Our membership of Noonan families has moved in quite a short time from 500 to 600 reflecting a higher profile for the charity and the condition itself as well as perhaps more genetic diagnoses.

We have some exciting plans to provide “start up money “for some new research and the process of finding new projects to support will be led by our medical adviser Professor Michael Patton. We have experienced success here before and can go forward with a lot of confidence recognising that good research takes patience and application over a period of several years.

The programme for our Families Day is now in its final form and includes a session from one of the leading endocrinologists (growth) in the country, a strong contingent of specialists from Great Ormond St London hospital in the areas of feeding and speech and the chance to ask questions of the leading experts. There are limited places and not many left so please contact NSA quickly if you want to come.

Keep supporting us please in whatever way you can and please use your social media contacts to continue to spread the word and help us find new supporters and Noonan families who don’t know about us already.

Ian, Chair of board of trustees.

Ian A Legg