Shattered but still on a high after an amazing weekend spent with very special people brought together by Rett syndrome, united in a common goal to improve life in some way for those families affected.

For the first time Rett Education were delivering their conference with Susan Norwell on the Friday. Rett UK picked up the baton from Friday afternoon through to Sunday lunchtime and then Rett University/Girl Power to Cure are hosting an event on Guided Reading today and tomorrow. We were also delighted to be joined by Rachael Stevenson, Reverse Rett, and Stuart Cobb on Sunday morning to hear all about the latest research and possible treatments.

Rett UK were very lucky to have a host of key professionals present including Adrian Bird, Angus Clarke, Hilary Cass, Adrian Kendrick, Mike Kerr, David Dewar, Meir Lotan, Cochavit Elefant, Mark Bailey, Alex Gibson and Stacey Clough. Special guest Alison Kerr was able to join us as part of the expert panel at question time and spent a lot of time talking to families both old and new.

Running alongside presentations we had Cindy-Jo Morison (music therapy), Stacey Clough with Yvonne Lai from Interrett  (dental health), Gilly Martin (physio) and Rob, Hector and Joe from Tobii Dynavox delivering 1:1 sessions.

Writing that sounds like an all star cast in the UK Rett Community; we were very lucky!

The feedback from the families has been extremely positive. However, we are aware that this is only accessible to a smallish number of the families who are Rett UK members so our focus now is on pressing ahead with Regional Hub developments, picking up the local support groups and contact networks to help ensure everyone has better access to support and information where they live. We can’t take the foot of the fundraising pedal to do this but we are moving in the right direction.

On a personal note, I have to say it was a slightly surreal experience organising and delivering the Family Weekend having attended with Rosie for so many years; especially as it was Alison Kerr who confirmed her diagnosis at that hotel almost 18 years ago to the day.

It is some journey you have taken me on Rosie. I could never change the fact you have Rett syndrome but I have at least been able to turn it in to something positive and met some of the most amazing people along the way. So our journey continues …

Interactive Music Session with Cochavit Elefant

Kay and Katie Beadle ready for the evening’s entertainment!

Here are just a couple of photos from the weekend courtesy of Clive, Kay and Katie Beadle.. more to follow when we get them back from the photographer.