Friedreich Ataxia
What is Friedreich Ataxia?
Friedreich Ataxia (FA or FRDA) is a slow, progressive disorder of the nervous system and muscles, which results in an inability to co-ordinate voluntary muscle movements (ataxia). This condition is caused by the degeneration of nerve tissue in the spinal cord and of nerves that extend to peripheral areas such as the arms and legs. FA affects the upper and lower limbs as well as the head and neck. There is a loss of sensations in the arms and legs, but mental capacity is not affected. For more information about Friedreich Ataxia click here.
The Consensus Clinical Management Guidelines for Friedreich Ataxia
Click here to be taken to these guidelines which have been created for both healthcare professionals and people who are affected by this condition.
The Friedreich Ataxia Research Association (FARA NZ)
The Friedreich Ataxia Research Association (FARA NZ) is a not for profit organisation supporting New Zealanders affected by FA. They aim to improve the quality of life for people diagnosed with FA and support funding of research to treat this rare neurodegenerative condition.
Mission: United, Positive and Strong advocating and supporting people with Friedreich Ataxia to have the best care, treatment and quality of life.
Vision: A cure for Friedreich Ataxia.
More information about FARA NZ is available on their website: www.fara.org.nz
Research
Although German physician Nikolaus Friedreich first recognized Friedreich’s ataxia in 1863, it was not until 1996 that two scientific teams discovered the underlying cause of the disease: a mutation in the gene for frataxin protein. As scientists learn more and more about Friedreich’s ataxia, they are able to direct their research efforts to creating treatments that show the greatest possible potential for treating Friedreich’s ataxia. Research into FA is occurring throughout the world. Many New Zealanders with FA have participated in the Friedreich Ataxia Clinical Research Program led by Professor Martin Delatycki at the Murdoch Children’s Research Institute and the Friedreich Ataxia Clinic at Monash Medical Centre in Melbourne.
Information on research happening in the area can be viewed here: http://www.curefa.org/network
Useful Websites
www.curefa.org – The Friedreichs Ataxia Research Alliance – USA
www.fara.org.nz – The Friedreich Ataxia Research Association (FARA NZ) is a not for profit organisation supporting New Zealanders affected by FA.
Online Support Groups
FARA NZ have a New Zealand Facebook page for people with lived experience of Friedreich’s ataxia: https://www.facebook.com/FARANewZealand
There is a Facebook group for members to join for support with Ataxia. Kiwis with Ataxia is a closed Facebook group, to join you have to click “join group”. Search Kiwis with Ataxia on Facebook or click here