Last week I was away from Joe and the kids down in Sussex. It is a year since myself and 3 other parents whose children have FACS Syndrome set up FACT Trust and became Trustees. This was the first Trustee meeting in which a lot was discussed. FACT has been set up to ensure that children who have a diagnosis of FACS get the correct support from the Government and also the Drug Company.
It was a chance to discuss the forthcoming meetings with MPs , across the country who are fully backing Awareness for FACS Syndrome and think Government should be helping out more, and doing more to highlight the condition. Over the next few months things are going to be very busy with FACT, lots of meetings with MPS, NHS, Media and a few other things in which at the minute I cant talk about, but will do when the time is right.
Id never travelled to Sussex before, it really is a lovely place to visit. Very leafy (different to Manchester) with really nice views of the beach, sea, Butlins!!! And shops. The best part of the trip was definitely Cheesecake Id tasted in a lovely café called The Lobster Pot….it was gorgeous. Never visited Sussex before?? If not but get the chance to really is worth a trip.