About FARA NZ

FARA NZ was founded by Dianne Boon and Roger Alexander. Dianne's family was personally impacted by Friedreich Ataxia (FA). In 2008, Dianne's three children were diagnosed with FA. At the time, they were told there were no treatments or cures in New Zealand. This news was a devastating shock to the family.

In a state of grief, the family reached out and found hope by connecting with the FA community in Australia. Inspired by this positive change, Dianne and Roger decided to set-up FARA New Zealand. Our goal is to ensure that other Kiwis with FA and their families don’t have to go through a devastating diagnosis alone.

We now work closely with fara Australia and are supported by the Muscular Dystrophy Association of NZ and cann Charitable Trust. We have made significant progress, but we still need your help in our fight against Friedreich Ataxia.

“Our family was totally devastated when we were told there were no treatments or cure, we realised that our lives were changed forever. The following few months were very hard, we were in a state of shock and grief. 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. ”

— Dianne Boon

The Board

The FARA NZ Board is a dedicated group of volunteers elected at our Annual General Meeting. We work tirelessly to promote our mission, set our goals, and oversee all fundraising activities. Our passion is to serve and support the entire FA community in New Zealand, ensuring every member has access to the best care, resources, and hope for the future.