Fragile X New Zealand is a parent-led, charitable organization that has three primary aims:
- to provide support, information and services to individuals, parents/families/whānau and communities affected by Fragile X
- to raise awareness and understanding of Fragile X syndrome and Fragile X-associated disorders
- to highlight the benefits of a Fragile X diagnosis
Fragile X New Zealand:
- coordinates a national support network
- provides up to date and evidence based information and advice about Fragile X syndrome and Fragile X-associated disorders
- runs local workshops and national conferences
- maintains a library of useful books and audio-visual material
- maintains regular contact with a global network of families, researchers & clinicians who are working to understand, treat, manage and eventually find a cure for Fragile X
- facilitates Fragile X Education Workshops in schools nationwide
- coordinates regular Fragile X Clinical Forums in collaboration with neuro-development paediatrician Dr Andrew Marshall and CCDHB
Board of trustees
Fragile X New Zealand was established in 2000 and is currently administered by the following board.
Jude Pani – Chairperson
Following a career in local government, Jude is now Executive Officer of Te Tatau o Te Arawa Charitable Trust. This is the Te Arawa partnership with the Rotorua Lakes Council. Jude is also Rotorua Catchments Advisor to the Bay of Plenty Regional Council. New to the Fragile X community Jude was diagnosed with Premutation Fragile X in 2017, her daughter Kiri also has Premutation Fragile X and both Kiri’s daughters have Full Mutation Fragile X syndrome. It is now about how she can help her daughter and mokos live a full and happy life with Fragile X and also how she can reach out to others in the Fragile X community. Attending the July 2018 FX International Conference in Cincinnati was a significant learning opportunity for Jude and Kiri. It was an experience that is thoroughly recommended.She is excited to be part of the Fragile X community in New Zealand and looks forward to the opportunity to contribute as a member of the FXNZ Trust.
Louise is a Chartered Accountant at Fonterra with 8 years accounting experience. Her background is in corporate accounting having worked on large investment projects for both Stainless and IS Deployment. Louise has developed and built a service offering internally within the company for Project Accounting and developed guidelines published for companywide implementation. She has completed Statutory and Monthly Financial reporting for entities and Business Units. Louise also a mother of two children one with Fragile X syndrome and is a carrier herself. She is driven to strengthening and expanding the services that FXNZ provides to the community as more families receive a diagnosis of fragile X and demand grows.
Bronwyn Markey, BHSC in Nursing- Secretary
Bronwyn has worked as a registered nurse for 19 years in New Zealand, Australia and England. For the last 15 years she has specialised in haematology nursing and currently works in a day clinic administrating chemotherapy to both oncology and haematology patients. Bronwyn is the mother of two young boys with full mutation Fragile X syndrome. She discovered her premutation Fragile X status after the diagnosis of her boys. Bronwyn’s focus in her work as a FXNZ board member is to increase awareness of Fragile X amongst the medical, education and social services.
Lance Norman, BCom, Dip Com- Trustee
Lance is CEO of Hapai Hauora Tapui (Maori Public Health). He has held a number of roles previously including Senior Advisor at the National Urban Maori Authority; Director of Funding, Contracting at Te Wahanu o Waipareira and Hoani Waititi Marae; CEO for Waiora PHO; and Deputy CEO for the Waitemata Primary Health Organisation. He has previously worked as a Senior Auditor for one of the largest auditing companies in New Zealand, as a Financial Controller for a multi-national corporate and has been a Business Manager in a number of capacities. Lance is a member of the New Zealand Institute of Chartered Accountants. Lance is married to Patricia and they have four children. In 2010 they received a diagnosis of fragile X for their youngest child, which led to the cascade testing of all their children. As a result all four of the Norman children were diagnosed with fragile X. Lance has been a FXNZ board member since 2012. He has a strong personal commitment to creating a positive future for people affected by fragile X.
Raymond Dickinson- Trustee
Raymond is currently the Sales Director and Business Director at GKC Ltd. He has over 20 years’ experience in the Information Technology industry in a variety of roles including technical, sales, and management. He has been involved in all aspects of business including strategy, go-to-market, execution of sales, new products, professional services, marketing, operations, finance and human resources. Raymond and his wife Angela have three children, two with full mutation Fragile X syndrome. He understands the significance a diagnosis of fragile X can have for an extended family network and is driven to improve outcomes for individual, families and the community affected by Fragile X. Raymond is focused on increasing the level of support for children with Fragile X and importantly their parents. He believes the more we can support and educate parents and families the better prepared they are to support their amazing children.