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Activities

Workshops

Over the last three years the Fragile X Trust (NZ), in conjunction with the Wellington Fragile X Support Group, has run a series of successful workshops aimed at raising awareness and upskilling people working with fragile X families and children. Three of these workshops have included Louise Gane, genetic associate at the MIND Institute University of California at Davis, as keynote speaker and the audience has been in awe of her knowledge and passion for fragile X families.

In the latest two workshops, the leading international expert on education and behavioural issues in fragile X, Dr Marcia Braden, spoke to very appreciative audiences in Wellington and Auckland. The team-based workshop in Wellington was particularly successful. More workshops are planned for early 2008.

For more information on past and upcoming workshops, please contact Chris Hollis.

Conferences 

The Fragile X Trust (NZ) has been represented at three conferences in 2007: 

  • Human Genetics Association of Australasia. Auckland, July. Oral Presentation by Anita Nicholls and Chris Hollis: "Parents' perspective on testing for fragile X syndrome"
  • New Zealand Organisation for Rare Disorders. Wellingtom, October. Oral presentation by Anita Nicholls and Chris Hollis: "Family perspectives on newborn screening for fragile X syndrome"
  • Paediatrics Society of New Zealand. Christchurch, November. Poster presentation by Anita Nicholls, Jodi Heenan and Chris Hollis: "No Longer Fragile: An education programme for children with fragile X syndrome"

The Trust has organised two national conferences with keynote addresses by international experts in FXS, and aims to organise a national conference, seminar or workshop every two years.

The first conference was held in 2001 in Hamilton. The speakers were Dr Randi Hagerman & Louise Gane from the United States, and Dr Jonathan Cohen & Rashelle Cohen from Australia.  The speakers  at the conference held in Wellington in 2003 were Dr Jonathan Cohen, and Dr Marcia Braden from the United States.

The conference attendees included parents of children & adults with FXS, and health & education professionals working with people affected by FXS.