New Zealand FA Clinic
We are extremely happy to announce that we have our own FA clinic in New Zealand at the Centre for Brain Research Neurogenetics Research Clinic at the Auckland University.
The CBR Neurogenetics Clinic was developed to support New Zealanders with rare neurogenetic conditions by linking them to international research and expert assessment by allied health professionals including physiotherapists, occupational therapists, speech and language therapists, audiologists and orthotists.
The CBR Neurogenetics Clinic at the University of Auckland is now a site for Friedreich's Ataxia Clinical Outcomes Measures Study (FACOMS) funded by the US National Institutes of Health. This is the same study that many of you would have had at the Melbourne FA Clinic.
In November, Dianne Boon and Barbara Croawell were invited to Auckland University to meet some of the team responsible for developing the clinic – Dr Richard Roxburgh, Julie Rope and Miriam Rodrigues. People with FA will be invited to attend the clinic and participate in the research study and will also be assessed by the allied health team. This team is committed to sharing knowledge and information from their assessment and management plans with local health professionals involved in your care.
FARA NZ is hoping that all our members will take up the opportunity to attend the clinic. Ensuring that NZ has its own research clinic is very important as, in the future, we could have clinical trials occurring here in NZ. Meanwhile we want to ensure that our members have access to expert clinicians to support the coordinated management of their condition.
Importantly, you might be thinking how to enrol in the clinic. The clinic coordinator will be contacting people diagnosed with FA (this information will be gathered from the New Zealand Neuromuscular Disease Registry). You may want to check to see if you are enrolled in the registry. For more information about the registry please go to NZ NMD Registry.
FARA NZ is proud to be funding the clinic to ensure that those members with FA who live outside of the Auckland region will be able to travel and attend the clinic. The Duncan Foundation has also been instrumental in developing and funding the clinic and we appreciate their ongoing support.
From left - Kerry Walker Senior Clinical Research Coordinator, Associate Professor Richard Roxburgh: Neurologist and Principal Investigator, Miriam Rodrigues: Curator of the NZ Neuromuscular Disease Registry, Julie Rope: Neurophysiotherapist and Co-investigator, Barbara Croawell: Secretary FARA NZ and Dianne Boon: Chairperson FARA NZ.