Our Impact: Funding Friedreich Ataxia Research in New Zealand

Since FARA NZ was founded in 2014, we have donated more than $250,000 towards Friedreich Ataxia research and to assist NZers living with FA to visit the Neurogenetic Research Clinic at the Centre for Brain Research, which is based at the University of Auckland.

2026

Awarded funding of $39,977 to University of Auckland CBR Neurogenetics clinic. This funding covers three domains:

  • Participant Transport and Accommodation Costs for those outside Tāmaki Makaurau /Auckland.

  • Coordinator Time for UNIFAI plus CBRNC-led research

  • Administering an International Collaboration in Nerve Ultrasound. This is an exciting piece of research investigating the peripheral nerves of people living with FA. There are 28 clinician-researchers from 14 institutions around the world taking part.

2025

Provided a $25,000 donation to the AIM Fund in partnership with FARA (US) and fara Australia. This donation went towards research on ‘The N-terminus of frataxin and its role in FRDA’. You can find out more here.

The Award for Innovative Mindset (AIM) supports the initial exploration of innovative, high-risk, high-gain, and potentially ground-breaking concepts in FA research.

2024

In partnership with FARA (US) fara Australia, we donated $25,000 to the AIM Fund to fund research on ‘Delivery of Frataxin in vitro transcribed mRNAs as a therapeutic approach for Friedreich ataxia’. You can find out more here.

$12,170 donated to the University of Auckland Travel Fund to assist people living with FA and their families to visit the Neurogenetic Research Clinic as well as $17,810 to help fund the Study Coordinator’s salary. Crucially, the coordinator role was able to obtain ethics approval for <16yo with FA to participate in UNIFAI as well a separate ethics approval for children with FA to attend the CBR Neurogenetics Clinic outside of the UNIFAI study.

Furthermore, we also contributed $18,000 to fund a PhD Scholarship grant for research to investigate hearing in FA Patients.

2023

A further $15,000 distributed to the University of Auckland Travel Fund to assist people living with FA and their families to visit the Neurogenetic Research Clinic.

2022

$16,005 donated to FA research via fara Australia and $6,020 donated to the University of Auckland Travel Fund to assist people living with FA and their families to visit the Neurogenetic Research Clinic.

2021 and earlier

Year End 2021

  • $6,020 donated to the University of Auckland Travel Fund to assist people living with FA and their families to visit the Neurogenetic Research Clinic

Year End 2020

  • In partnership with fara Australia, $19,215 was donated to fund stem cell research under the direction of Professor Mirella Dottori at the University of Wollongong.

  • $12,040 donated to the University of Auckland Travel Fund to assist people living with FA and their families to visit the Neurogenetic Research Clinic at the Centre for Brain Research, which is based at Auckland University.

Year End 2017

  • Funded 1 patient to Monash Neurology and donated $40,000 towards FA research via fara Australia.