Workshop for families living with Fragile X, Auckland 12th March 2020

Dr Marcia Braden presents:

Information about understanding anxiety; Behaviour from the inside out; Supporting independence from the inside out; Sexuality and relationship building; and Family wellbeing

Dr Jonathan Cohen presents:

An overview of fragile X and fragile X-associated disorders; fragile X and medication; carrier health and wellbeing

Planning for Success Workshop, Auckland 13th March 2020

Dr Marcia Braden and Dr Jonathan Cohen present:

An overview of fragile X syndrome; The impact of anxiety on functioning; Fragile X learning style; Strength based strategies; Making inclusion work

Self-Advocates Workshop, Auckland 14th March 2020

The aim is for participants to identify personal triggers and symptoms related to anxiety; discuss with others who have FXS and professionals, their symptoms and remedies; and practice a variety of strategies to reduce anxiety.

Dr Marcia Braden and Dr Jonathan Cohen will:

  • Review triggers, physical and behavioral symptoms and remedies for anxiety
  • Teach ways to manage anxiety through exercises, medication, and deep relaxation

Advanced Strategies for Success Workshop Auckland 27th October 2017

Fragile X Workshop Auckland 6th March 2014

Fragile X Workshop 23 September 2011

Learn more about Fragile X with International FXS expert Louise Gane and Sensory Regulation with Occupational Therapist Kate Skinner.

Louise Gane – Fragile X Syndrome Presentation: 1, 234

Kate Skinner – Sensory Regulation Presentation: Kate’s Sensory ModulationSensory Rich activities


Over the last three years Fragile X New Zealand has run a series of successful workshops aimed at raising awareness and up-skilling 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 more information on past and upcoming workshops, please contact our national coordinator Andrea Lee.


Fragile X New Zealand 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”

Fragile X New Zealand 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.

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