With only  just over four weeks to till the Rett UK 30th Anniversary Family Weekend the office is certainly a hive of activity. With over 65 families attending, 20 plus professionals, 25 volunteer carers as well as our trustees and staff team we have filled the hotel and have exclusive use of it over the weekend.

In case you have missed it, Rett UK are not the only organisation providing workshops, presentations and seminar for families and professionals. For the first time, two other Rett organisations are also at the hotel; Rett Education on the Friday with their key note speaker Susan Norwell (who is also staying on over the weekend to do some 1:1 sessions with families she has booked) and then Rett University are there on the Monday and Tuesday delivering sessions on Guided Reading, again with Susan Norwell. So, very busy weekend for Susan but we know she is in high demand so this is a great opportunity for UK families to see and hear Susan in action.

We are really pleased that this has all come together. Whilst it we appreciate it is logistically difficult for some families to organise childcare, get time off work and meet the expense of the whole five days of Rett specialist support and information, it has given families an opportunity to pick and choose what is most relevant and important to them whether they are on their journey with Rett.

I believe this is really important and it is a result of some excellent collaborative work that has gone on behind this scenes in the last 8 months. Starting with the alliance of Rett UK and Reverse Rett in January 2015 and then more recently in July the announcement of the formation of the Rett Disorders Alliance which involves a wider group of Rett related organisations. The last few years may have been tricky for some families, and to be honest the organisations, to navigate their way around the various groups and have a clear understanding of who was doing what.

We hope that this work will provide more opportunities for the groups to work together, making the best use of resources available so we are not duplicating work and most importantly that families get the best support, information and access to specialists in a timely and efficient way and the research towards treatments and a cure that we all so desperately want, is well supported so that hope becomes a reality.

Stronger together.