Thank you to the wonderful support provided by the Rotary Club of Narrandera from their Christmas Party which raised $3,200 for research. Special thanks go to Joy and Robert Norrie together with Beth and Greg McVicker who organised and catered the event. Robert said of the evening, "We had a great night even though it was very hot, 36 degrees, until late. We had 98 people seated on our lawn beside the Murrumbidgee River. A chandelier hung in the overhead gum tree and as night settled in we were entertained by some of the Riverina Men’s Choir."
A very big thank you to Nick Moretti (pictured left with Graham Opie, MND NSW CEO) and his wonderful team from the Newcastle Italian Film Festival. This is the 5th year the Festival has supported the work of MND NSW with the most recent Festival raising $14,000. A huge achievement.
Thank you to the Kootingal Hotel and their amazing supporters who have raised over $16,700 for motor neurone disease from their Mullets for MND event. The idea for the event was to raise awareness and funds, and to have some fun along the way. The months of mullet growing culminated in a day of family fun, live music and the mullet judging competition. Thank you to the Kootingal community for your support.
Peteris Ginters (MND NSW member) shares what he has learnt along the way
It has been approximately two years since I was diagnosed with motor neurone disease. In that time the strength in my arms and hands has gradually declined to the point where I have gone from being able to use a computer keyboard and mouse (and mobile phone) without difficulty, then with difficulty and now not at all. Obviously, this has had a significant impact on my ability to communicate and remain (semi–)independent and active.
From an early stage I started investigating options that would allow me to have access to a computer so I could use the Internet, send and receive emails and text messages and use of my mobile phone remotely et cetera. I have also spent time investigating some of the voice recording/synthesis options that are available for people with MND. Although I don’t need this type of assistance yet (or, hopefully, in the near future) all the information I read suggested it is better to "bank" your voice sooner rather than later.
I thought it might be useful if I shared my experiences with assistive technology that aids with communication when your ability to use your hands is limited or non-existent. (This article has been written using some of the equipment described below.)