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AUTUMN 2024 InTouch | 13 EIGHT KEY CONTACTS TO HELP YOU NAVIGATE FA One in 90 people are carriers and don’t even know it until it affects their family. Register with this valuable research organisation by emailing nznmdregistry@adhb.govt.nz The Duncan Foundation The Duncan Foundation is a national support service for people living with neurological conditions. People affected by FA can access experienced clinicians including neuro physiotherapy, and therapist services through registering with the foundation. With time, the Duncan Foundation intends to broaden the services they support. Their website is a good source of information: www.duncanfoundation.org The Muscular Dystrophy Association of NZ (MDANZ) MDANZ also supports people with neuromuscular conditions including FA. Their fieldworkers provide support, information, and advice relevant to your needs and situation. MDA provide funded access to private, close to home counselling for members through a respected counselling service. They also provide discretionary grants to eligible members. For more information please email: info@mda.org.nz or phone 0800 800 337. The FA App The FA app is an excellent information and connection tool available free on your phone. The App has features which keep people with FA – and their friends and family – up to date with the latest FA information. Its purpose is to unite the FA community worldwide. It empowers each of us with useful information, news, trackers and tools. Most importantly it enables every single FA’er to contribute to the research that will power the cure. 5 6 Download the The FA App now in the AppStore or Google Play. Find out more at www.theFAapp.org Online Information and Support Groups You can access advice and support from other families affected by FA from around the world. The FA Parents Group is a free, private email support group for parents whose children have been diagnosed with FA. You can be an active participant, or simply receive and read emails without responding. Contact FAPG via: www.faparents.org/fapg/ A great source of information for FA’ers, families, and health practitioners is the FA Clinical Care Guidelines, found here: http://tinyurl.com/3kmw3hkt Friedreich Ataxia News is also a helpful resource for keeping up to date with global happenings around FA. You can sign up to receive their newsletter at: www.friedreichsataxianews.com/ Reata Pharmaceuticals, a USA-based pharmaceutical company has new medications for the treatment of FA in the pipeline. They have set up ConnectFA, a good online resource for information and support, at https://www.connectfa.com/ 8 7