Dear Families and Friends,

I have been reading quite a lot of interesting articles on the research results on a variety of biological drugs being used to treat a variety of genetic disease. We all look forward to the time when we will have the power to change prognoses. I have read where there are now at least 230 medicines created from biotech techniques. Many at this stage are related to cancer treatment. We have all learnt through the diagnostic testing for Rett syndrome how complex this process is and how there are more factors than we thought about the faulty gene and other factors causing Rett syndrome. We have watched experiments with other diseases and seen some of the complications of gene therapy has been more difficult process than scientists thought at the beginning.

The Rett Newsletter from Scotland had an interesting feature commenting on an article in a recent issue of Nature. Scientists at Sangamo BioSciences in California describe a new process where a specially made zinc finger protein can cut DNA and the result called ZFN finds the specific sequence and replaces it too. Fresh copies of the correct gene are sent along with the zinc fingers. The experiment reported by the scientists could be corrected in 20% of the cells using ZFN. This was an experiment on cultured cells rather than people. It is said that even if 1% of the cells have the right gene it may be enough for the patient to remain well. At present the scientists at Sangamo are working on sickle cell disorders. Dr Michael Sullivan has promised to read the article in Nature and comment on it for Rett families in New Zealand.

At a practical level there is an interesting article on improving the functional skills and physical fitness in children with Rett syndrome. Because of the copyright act, the IHC library has said they would be pleased to send it to you. A group of researchers in Israel prepared a physical fitness programme on a daily basis showed that at the end of the training programme the children had improved considerably and a positive improvement from treadmill training. Although Liz McGibbon has retired from the IHC her web address is still active, Liz.McGibbon@IHC.ORG.NZ.

Kathy Bree emailed from Australia to say they are all enjoying life there. She wished to be remembered to friends in NZ. Sarah is 18 years, enjoying walking and swimming. They find the Rett Clinic at Westmead Hospital very good. Kathy said IHC is so helpful for alternative care compared to the form filling she has to embark on every six months for respite.

With kind good wishes…..Gillian Deane