Newsletter 2016 #4

Greetings and exciting changes for NZORD

Letitia O'DwyerWelcome to the NZORD newsletter for August 2016.

It has been a busy two months for the NZORD team. The team has been kept busy with our office move.

The NZORD team have relocated into new office space at 104 Vivian Street, corner of Vivian and Taranaki Streets.

After being in the Tinakori Road premises since October 2009, it is an exciting change for the team and being centrally located will be helpful for getting to meetings around Wellington.

All email addresses are the same, however please note our phone numbers have changed, the new numbers are listed below:

  • (04) 385 1117
  • (04) 385 1119

The other piece of exciting news is that we have a new team member joining NZORD this month, you can read more about Vikki further on in the newsletter.

Best wishes

Letitia

NZORD team 

Meet Vikki Ambrose – NZORD’s Relationship Manager

Vikki AmbroseNZORD welcomes a new member to their team – Vikki Ambrose. Vikki will begin the newly created role of Relationship Manager from 15 August.

This role is responsible for providing education, guidance and advice for patients and families living with a rare disorder whilst keeping up to date with the latest publications, studies and clinical papers in the rare disorder space.

Vikki has 25 years’ experience in the health sector, starting out in Clinical Biochemistry, and Haematology & Transfusion medical laboratories in the UK, including Oxford University Clinical Trials Unit. After moving to NZ in 2000 she worked in research, surveillance and diagnosis of communicable diseases and environmental microbiology for ten years at ESR, resulting in a number of scientific journal publications. After redundancy she trained as a teacher, and more recently has worked as an advisor in health promotion for NZ Defence Force and the Cancer Society. She holds a Bachelor of Science in Microbiology, a Post Graduate Diploma in Teaching and a Masters in Cell and Molecular Biosciences from Victoria University, Wellington. Vikki has lived on the Kapiti Coast since moving to New Zealand with her three, now grown up children, her husband, and three dogs.

Ignite Consultants team up with NZORD

Ignite ConsultantsNZORD are extremely fortunate to have been one of the charities chosen to work with Victoria University’s Ignite Consultants. The student consultancy started in Wellington last year, after more than five successful years at Otago University. The student consultants work with no more than three non-profit organisations per semester.

Ignite will work with NZORD over an eight week period (beginning in August) to find ways to enhance and improve our marketing and funding functions within the organisation. At the end of the eight weeks, the Ignite Consultants working with NZORD will present their findings to the team.

Entertainment Books

NZORD are selling Entertainment books again this year, both the books and the online membership can be purchased by clicking on the link below. Proceeds will go towards helping to support and improve the level of organisation and information among patients and families affected by rare disorders.

From every Membership we sell, 20% of the proceeds to towards our fundraising. The more Memberships we sell, the closer we get to our goal – so please forward this email to all your family and friends!

For a limited time, postage is FREE to any address in New Zealand when you buy the NEW 2016|2017 Entertainment book online from us.

Purchase the NEW 2016|2017 Wellington Entertainment Membership today and you will be automatically entered in the draw to win a $1,000 shopping spree at the new David Jones!

http://www.entertainmentbook.co.nz/orderbooks/921v787

Entertainment books 

SWAN NZ

NZORD have noticed an increase in the number of enquiries from patients and families who had not received a diagnosis for their condition. Having no diagnosis or label for their condition can often lead to feelings of isolation and loneliness. It also hinders the patient’s ability to join one of the rare disease support groups available to those who have received a diagnosis.

Based on this and having been inspired by “Syndromes Without A Name” (SWAN) groups that have been set up in Australia, the US and the UK, the NZ Organisation for Rare Disorders has set up a SWAN NZ support group. SWAN New Zealand is a support group that has been established for New Zealand patients and families.

If you would like to join SWAN NZ, please visit the recently launched website www.swannz.org.nz and fill in the membership form. SWAN NZ is free to join and is welcoming new members.

Auckland University Research Study

The research team are still looking for patients to join this study. If you do know of anyone who meets the criteria, please do get in touch with Jesse:

UNIVERSITY OF AUCKLAND - RESEARCH STUDY

DO YOU HAVE A CHILD (OR CHILDREN) WITH AN UNDIAGNOSED NEURODEVELOPMENTAL CONDITION WITH AN ACCOMPANYING INTELLECTUAL DISABILITY?

Researchers at Auckland University are leading a study to uncover DNA changes responsible for rare neurodevelopmental disorders that have not been explained through standard tests. They plan to apply revolutionary new DNA sequencing technologies to obtain a genetic diagnosis for participating families and demonstrate the benefits of routine clinical use of this technology in New Zealand.

Participants would need to provide a DNA sample (saliva or blood).

If you are interested in participating, please contact the research team directly – Whitney Whitford at arnnz@auckland.ac.nz.

More information about the wider research programme can be found at the link below: www.mindsforminds.org.nz.