who-is-fara.jpg

About FARA NZ

In 2014 Rodger Alexander and Dianne Boon worked together to set up FARA NZ. Rodger had extensive experience from his time on the NZ MDA board and also as a board member of Fara Australia. Sadly a year later Rodger had to resign due to ill health and he died in 2016.

Dianne will never forget the day 2nd of April 2008, when 3 of her children 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 and coordination. None of us had heard of the condition or met anyone with the condition. Dianne remember’s searching the internet and finding shocking and devastating information. Terms including progressive, losing mobility, affecting speech, no treatment and life limiting.

“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. At the clinic we met other people and their families affected by FA. After the clinic appointment we went out to dinner with some of the families and we had a great time, 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 resilience and hope needed to live with FA.”

Dianne Boon

The Board

The Board is run by a group of volunteers elected at the Annual General Meeting.  Board members work together to promote our mission,  goals, fundraising and  support the FA community. Because we are a small organisation we have links to the International FARA community and we work closely with fara Australia. Nationally we are supported by the NZ Muscular Dystrophy Association and the Duncan Foundation.

Dianne Boon (Chairperson)

Kate Dench (Treasurer)

Barbara Croawell (Secretary)

Denise Finch

Sandra Terpstra