Conference Videos

In 2007, we held our inaugural conference, Empowerment 2007. We had a great range of speakers, including Kathy Hunter, founder and president of the International Rett Syndrome Association, Dr Michael Sullivan, director of the Children's Cancer Research Group, Haemish Crawford, New Zealand's leading orthopaedic surgeon, and Daphne Rickson, lecturer on music therapy at Massey University.

We recorded the speakers on video and we are now able to make these available for viewing.

Kathy Hunter

Kathy shares her great knowledge and experience about Rett syndrome and speaks about the diagnosis of Rett syndrome and about its genetics. She discusses the symptoms of Rett and gives advice for understanding and dealing with them. Kathy wraps up her talk with some words of encouragement for all our families.

 

Mike Sullivan

Mike speaks about the genetics of Rett syndrome. He introduces some genetic science and speaks about genetic issues relating to Rett syndrome, before considering some possible genetic treatments for Rett syndrome.

 

Haemish Crawford

Haemish talks about orthopaedic problems effecting Rett children, including joint contractures, fractures, hip joint subluxation/dislocation and scoliosis. He talks about treatments for these problems, particularly about surgical treatment of scoliosis.

 

Daphne Rickson

Daphne talks to the group about music and music therapy. She speaks about using music therapy as a form of communication for Rett girls and how it can be used to teach a range of communication skills.

 

Questions and answers

The speakers answer questions. Including: sleep issues, varying degree of disability amongst Rett girls, testing for Rett syndrome, inheritance of Rett syndrome, learning therapeutic massage, laxatives, being an advocate for your child, orthotic braces, waiting list for scoliosis surgery, wheelchairs, being wary of 'miracle' therapies, transition care, trainee music therapists, using music to aid sleep, expressing moods through music choice, the comfort in structure and repetition, and speech therapy.

 

John Forman

John introduces the New Zealand Organisation for Rare Disorders and discusses the resources NZORD offers to rare disease support groups and NZORD's activities and achievements.