Extraordinary Kiwi Leanne Knox

Extraordinary Kiwi Leanne Knox turns engagement disappointment into fundraising dinner for family brain disease.

Leanne hopes to raise $10,000 in aid of Huntington’s disease, to help her mother and others like her.

Leanne Knox grew up seeing her grandfather struggling with Huntington’s disease. This incurable progressive genetic brain disease affects muscle coordination and leads to cognitive decline and dementia. It’s a tough disease for anyone to deal with, but even worse when you know the next generation could soon be affected as well. For Leanne’s family, it wasn’t long before her mother; aunty and uncle were all diagnosed.

“There is a 50/50 chance of inheriting the gene from a parent who has it, so I had to get tested last year”, says 25 year old Leanne. “It was a six month period from ringing up and being put on a waiting list to going through counsellor sessions and blood tests until my results came through in February. I remember sitting in the room with my family waiting for the results to be read. It took a while from having the envelope opened to having them read out, all I could think of was she didn’t know how to tell me I had it. But the result was negative; she was making sure she had it absolutely right as once she had given me that result she couldn’t take it back. I have been blessed not to carry the gene.”

At the time, Leanne was in a serious relationship and happily planning for the future. It wasn’t long before her boyfriend proposed, and the two began wedding plans in earnest. Butterfly Creek near Auckland Airport was chosen as the venue, with the date set for November 27th 2010. Yet disaster struck when the engagement was called off. The dress, venue and reception were to go to waste.

Leanne, who works as an event planner, began thinking about how she could turn her personal disaster into a lifeline for others. “I was walking up Mount Eden,” she says, “when I started thinking about a recent church sermon about being extraordinary. Suddenly the idea to hold a banquet dinner to raise money for Huntington’s disease popped into my head. I kind of pushed it off and thought “I can’t pull that off yet, I’ll wait until I’ve got more networks”, but the idea kept coming back to me. Then I thought “if only I had a free venue to hold it at!” It was this instant thought, Butterfly Creek, 27 November- the date that was meant to be our wedding and reception venue.”

Leanne set about organising a fundraising banquet and charity auction- with just six weeks to go. She enlisted the help of the Huntington’s Auckland committee, and also her friends and relatives in Auckland and the Waikato. The Huntington’s patron, New Zealand scientist Professor Richard Faull has agreed to speak at the dinner, and other offers are coming in. Temepara George, Silver Fern and 2010 Commonwealth Games Gold Medallist is confirmed as guest speaker along with music from Dame Kiri Te Kanawa’s piano player.

“I’m so excited that this is becoming a reality,” says Leanne. “I hope we can raise thousands on the night which will help the work of the Huntington’s Association. They help my Mum and others like her all around the country. I know just how needed their support is and I’m so glad my disappointment will help to provide a better life for others.”

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