When Rob Pakes was desperate about getting help for Alysha, he wrote to Mike about publicising Rett syndrome and the plight of Rett families. Mike promised to do a programme on Rett and Alysha to publicise the complex nature of Rett syndrome so other parents would not have to go through the same diagnostic odyssey that is the pattern for rare diseases.
Mike spoke at the first Rett fundraising dinner in Rotorua and agreed to become the patron of Rett NZ.
Mike McRoberts is one of New Zealand's pre-eminent television and radio journalists. He currently presents the daily news on TV3.
Mike's interest in Rett syndrome was inspired by his professor Mac Gardner at med school. He then happened to be at the San Francisco conference when the breakthrough on the Rett gene was announced. He went to the Rett syndrome booth to get the information for Mac and there he spoke to Kathy Hunter who told him she had been in New Zealand and gave him Gillian's e-mail address.
Rett NZ has been so fortunate that in spite of his busy life as a paedatric oncologist and chair of the Telepaediatric Group, Mike has had time to assist and support us. Thank you Mike for explaining in ways we can understand the complexities of Rett syndrome.
As Julia Roberts has helped raise Rett syndrome awareness on the international stage, Anna Stanley has become a Rett ambassador to publicize the Rett NZ cause and raise awareness of this condition. We are grateful to Anna for her generous work.
Anna is a famous New Zealand netballer (better known as Anna Rowberry) and has a busy life with her sport and her husband and adorable daughter. Read more about Anna supporting our cause in New Idea.
Rob Pakes. Rob Pakes is our new Rett NZ ambassador. After leading Rett NZ as its first president Rob is using his infectious talent for publicizing Rett Syndrome in this new way. Rob and Megan’s fundraising and raising awareness for families is appreciated by all members and supporters of our group. Rob’s report of Megan and his time at the International IRSA conference in California is in the Report Section on the website. We thank Alysha for being Megan and Rob’s inspiration.
RettNZ is pleased to that Mr Haemish Crawford, one of New Zealand’s leading orthopaedic surgeons, has agreed to be an ambassador for Rett Syndrome.
Haemish has taken a great interest in Rett syndrome and the orthopaedic problems associated with it. He has spoken at our Rotorua conference and given families the confidence to embark on the complex scoliosis surgery so many of the girls need. His professional knowledge and personal charm have made such a difference to families as they contemplate the complex operation which makes such a difference to the girl’s ability to sit and stand in a comfortable way.