ABOUT FARA NZ
Friedreich Ataxia Research Association New Zealand (FARA NZ) is a charitable organisation set up to improve the quality of life for people diagnosed with FA, by supporting them and their families and to assist the funding of scientific research to treat this rare neurological degenerative condition.
BACKGROUND TO FARA NZ
On the 2nd of April 2008, 3 of our kids James, Joseph and Therese were diagnosed with Friedreich Ataxia. At the time they were 23, 17 and 15 years old and having difficulty with balance, coordination. We hadn’t heard of the condition let alone met anyone with it. I remember getting home and searching the internet to find out more information and the words progressive, losing mobility, affecting speech, no treatment and limiting life were shocking and devastating. Our family was totally devastated that there were no treatments available to reverse the symptoms, we realised that our lives were changed forever. Later that year we went to the FA clinic in Melbourne Australia and met health professionals dedicated to researching the condition and possible treatments. For the first time we felt hopeful that something was being done to find a cure. We also met other people and their families that also had FA. After the clinic appointment we went out to dinner with two other Australian families with FA and found this very beneficial. With them we felt normal and supported. Meeting other FA families and knowing researchers are making progress to find possible treatments has been instrumental in helping our family build the resilience we need to live with the affects of FA.
In the years since 2008 we have connected with other families that also have FA and recognise the importance for a national support group. Rodger Alexander from Christchurch was the NZ representative for FARA Australia and he has been instrumental in setting up FARA NZ. The community of Manawatu has also been very supportive to our family helping us to fundraise for FARA NZ and to them we are incredibly grateful.
Dianne Boon (President of FARA NZ)