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12 | InTouch AUTUMN 2024 DIAGNOSIS OF FRIEDREICH ATAXIA IS AN EXTREMELY CHALLENGING TIME FOR BOTH THE INDIVIDUAL AND FAMILY Article by FARA NZ FEATURE Eight key contacts to help you navigate FA FARA New Zealand The Friedreich Ataxia Research Association of New Zealand (FARA NZ) is a national not-for-profit organisation advocating and supporting New Zealanders with Friedreich Ataxia to have the best care, treatment and quality of life. Our priorities include raising funds to support research; supporting people affected by FA; raising awareness of FA and collaborating with other organisations who support our work. Email us at enquiries@fara.org.nz for further information. We encourage people diagnosed with FA and their family and friends to become members of FARA NZ via our website www.fara.org.nz Friedreich Ataxia Clinic New Zealanders with FA can attend the Neurogenetic Research Clinic at the Centre for Brain Research, which is based at Auckland University. 1 4 2 3 FARA NZ supports a travel fund to enable New Zealanders with FA to attend this clinic where they can participate in international research on FA. Clinic appointments include physiotherapy and occupational therapy assessments, follow-up advice and collaboration with local health clinicians. The NZ clinic is an important milestone as this is where clinical trials for FA treatments will occur as scientific research progresses. For more information about the clinic please email the clinic coordinator cbr.nrc@auckland.ac.nz or contact FARA NZ. FARA US and FARA Aus FARA US and FARA Aus are partners of FARA NZ. We co-fund research projects and coordinate fundraising events, such as RideATAXIA and Lend Us Some Muscle. This partnership enables us to benefit from the Scientific Advisory Committee Structure in the US. FARA NZ have excellent up to date information on current research and the treatment pipeline, which can be found at http://curefa.org/pipeline/ The New Zealand Neuromuscular Disease Registry (Punaha Io Neurogenetic Research Bank) This NZ registry collects information about people who are affected by particular conditions including Friedriech Ataxia. Anonymised valuable medical data from the registry will be made available to researchers whose work is ethical and has been approved, thereby accelerating the research. With the advent of clinical trials for many neuromuscular conditions, patient registries mean that people who may be eligible for certain clinical trials are readily identifiable and can be contacted quickly.