Rob Pakes is the President of Rett NZ and the father of Alysha. Megan and Rob went to the International Rett Conference in San Francisco two years ago and came back brimming with ideas for fundraising and for promoting awareness for Rett syndrome in New Zealand. With a band of merry helpers they have had two successful fundraisers and persuaded organisations to support Rett projects.
Called back to New Zealand one year later by popular parental demand, Kathy and Scott Hunter are here to participate in the Momentum Conference. From Kathy’s kitchen table the whole world wide network of Rett doctors and parents has evolved. Who would have imagined so many girls being affected by Rett, which was thought to be so rare. The fax and the internet have generated publicity material and answers to many of the curious set of symptoms that were a mystery to doctors and parents alike. The research has led to the genes being isolated so that genetic therapy is now a real possibility, as we have seen from the mice models and will hear from one of the world’s eminent researchers, Prof Christodoulou.
Kathy is a fount of knowledge and her books have been devoured by parents and educators alike. Scott is here to give a father’s view of what Stacey means to him and other family members on the Chaps Forum.
Prof. John Christodoulou is a senior Australian human geneticist based at the Children’s Hospital at Westmead, and has particular expertise in the diagnosis and management of individuals with inborn errors of metabolism.
John Christodoulou is recognised for his contributions to the field of human genetics:
He also plays a significant role in teaching and education, giving at least 20 lectures a year to various medical and allied health groups, as well as to lay organisations.
In recognition of his supervisory skills and contributions to the University of Sydney, in 2004 he was awarded the University of Sydney Vice-Chancellor’s Award for Research Supervision Excellence.
Dr Christodoulou: "Rett syndrome is one of the most devastating disorders I have encountered. Our research is aimed at isolating the gene or genes responsible for this tragic disorder. It is only then that we stand any chance of understanding its biological basis, and of designing effective treatments."
Trish comes to IHC directly from the office of the Children’s Commissioner where she managed a team of advocates and supported the Commissioner for Children for about nine years. Trish authored the investigations into the deaths of James Whakaruru and the Aplin sisters which profiled the need for greater interagency cooperation in protecting children living in violent homes.Trish is also a trained secondary school teacher, social worker and counsellor. She was appointed to the role of Director of Advocacy in May 2006.
Trish leads a team of six advocates who respond to individual and systemic advocacy issues. The advocacy team work programme is focused on removing barriers of discrimination for disabled people and their families and proactive lobbying to ensure that people with disabilities and their families have their rights upheld and their needs responded to. The advocacy team works closely with government and other non government organisations to ensure the goals of the New Zealand Disability Strategy are realised.
John is the executive director of NZORD, the umbrella organisation for rare disease in the NZ community which account for 8% of the NZ population. He is active in many organisations and extremely generous with his time to organisations under his umbrella. His leadership at the hearings of the Commission on Genetic Modification brought many of the rare disease groups together to present the actual scientific cases of how important cutting edge science is in leading to life enhancing break throughs in medical research making a difference to those with rare disease.
John and Judith Forman are parents of 33-year-old twins with a rare lysosomal disease. There was little information available to them or their doctors for many years, but the arrival of the internet, connecting with other families world-wide, and attending medical conferences on the condition, mean they are now well informed about the disease and have good knowledge about the best care for Timothy and Hollie's complex condition.
John has worked in advocacy roles in a variety of organisations and recently spent seven years on IHC's Advocacy Advisory Committee. He runs the NZ Organisation for Rare Disorders which is committed to helping small support groups like Rett NZ get the advice and resources they need to improve treatments for their children and to engage with professionals in building knowledge about the disorders that affect their families.
Fiona teaches Jacinata Hall and has become very knowledgable about Rett sydrome. She is going to give parents ideas for helping the girls in the classroom. Fiona has been very supportive of Rett NZ activities and we thank her for her on-going interest in and support of Rett.
Fiona graduated with a Bachelor of Arts in Linguistics and Mathematics and a Diploma of Teaching. During her teacher training she went to Kimiora School where she remembers thinking clearly that she could never teach children with special needs. Little did she know back then just what would be in her future.
After a few years teaching, Fiona was seconded into the maths department at the Wellington College of Education where she trained teachers how to teach maths. Her oldest student was 50 years old and her youngest was 18. This was a far cry from the 9 and 10-year olds she had been teaching.
At the Wellington College of Education, Fiona was involved in the training of teachers on the three-year diploma course and the one-year degree course and upskilling teachers who were already teaching in classrooms. She also sat on the selection panel for candidates wanting to get into training college. She left this position on maternity leave and in between babies (four in total ... three boys and then a girl who range in age from 15 to 8), she and her husband a wedding reception, function centre cafe complex with accommodation which they ran for 10 years. During this time she did occasional relieving at local primary schools.
After selling their business in 2004, Fiona was offered a part time position at St Joseph's school in Upper Hutt. This was the beginning of her journey with Jacinta. She has been Jacinta's special needs teacher for all but two terms of her life at St Joseph's.
Scott Hunter hails from Washington DC , he is the father of Stacie and has followed the whole development of the search for other girls and the search for a cure from his own kitchen table. Scott is a retired teacher.
Bill Callaghan is the president of the Australian Rett Association. His daughter’s brave struggle with Rett and her becoming an angel has not impaired his interest in and determination to find all the girls in Australia and ensure they have all the medical care and educational opportunities open to them.
Rob Pakes is the father of Alysha, president of Rett NZ and with his wife Megan has been an active fundraiser for Rett NZ.
Mark Campbell is the father of Harriet and the vice president of Rett NZ.