May 14 2010

2010 Conference - Memorable

Many parents have told of the tears shed listening to Susan Norwell communicate with girls with Rett Syndrome and then the amazing feeling of Susan communicating with their own child.

Susan said "building reciprocity" , humour were important to tap into the girls' rhythm and unlock their potential.

For teachers and therapists it was an eye opener to see how much the girls understood but the apraxia they suffer from makes their response time very slow and one has to be patient and wait for their response.

Like all things in life practise helps!

Jean Campbell's talk on Musical therapy and Scoliosis was very helpful to parents who want to ensure their daughters have the benefit of musical therapy and for those who are contemplating scoliosis surgery.

Haemish Crawford's inspiring speech in Rotorua has demystified the terror of the operation and many girls are receiving it at the right time.

John Forman talked about the Clinical networks philosophy which will enable patients with rare diseases good access to medical help and easier referrals to local specialists.

Dr Rosie Marks outlined the latest trends in Rett research and was wonderful in answering numerous questions about treatment for epilepsy.

A lecture on epilepsy will be included in the 2012 conference.

Many thanks to fabulous speakers and to Mark for looking after all the arrangements at the Motel and to Dugald and Christine for looking after Susan Norwell.

Susan said she did not know how she was going to be able to work with the girls for just 30 minutes and she asked for divine intervention which she said was given to her.

Thanks to our sponsors Dr Phil Palmer and friends, Mrs Dawn Ibbotson, Kapeke Lions, Toll NZ and Deane Endowment Trust.