One of my most satisfying experiences since launching the CPA Australia president's charity has been the response from members and the wider community. It's been heartening to receive so many expressions of encouragement and support for the concept of the president's charity and for the particular cause I've chosen.

People have blogged, emailed and approached me in person to share their personal experiences of motor neurone disease (MND), which causes those affected to suffer a gradual loss of control of muscular function. There is no remission and the disease is ultimately terminal. Some of these experiences have been touching, others heartbreaking but the various accounts of how they were affected when a friend, relative, or they themselves were diagnosed with MND have been uniformly inspirational.

It was an uncanny coincidence that just as I launched the charity, news emerged of an exciting breakthrough in the scientific understanding of MND. Researchers from the ANZAC Research Institute at Sydney's Concord Hospital discovered a genetic mutation that causes a form of MND. This development is crucial to understanding any disease, and such an understanding is a significant step to developing a cure.

CPAs have taken to the cause of raising awareness about MND with typical energy and enthusiasm. For example, CPA Michael Camm has started a casual dress Friday in his workplace. Participants pay $2.00 a week and the proceeds are donated to MND Australia (MNDA). Another member, Peter Mogg, recently helped to organise an MND awareness day. This included a charity run / walk that raised over $70,000.

This month in Australia National MND Week runs from 4-10 May. The week will be marked by a range of activities, including, Cornflower Blue Day (9 May), when MND research can be supported through purchasing a MND Australia cornflower lapel pin.

Other activities planned for 2008 include:

• the MND Australia Parliamentary Global Day Breakfast at Parliament House in Canberra on 19 June
• Global MND Day on 21 June
• National MND conference hosted by MND Victoria on 24 June
• MND Queensland Walk to D'Feet MND on 13 September

There's no shortage of opportunities to get involved, and there's  also the chance for members to think laterally. As not-for-profit organisations, MND associations in Australia and elsewhere need all the practical support they can get. CPAs, through their own areas of expertise, networks and business links, are well positioned to help with financial and technical advice, and putting the charity in touch with corporate donors. Assistance with web design and media and government contacts are also welcome.

It would be great if our members in every branch or division could volunteer some time and work with me to raise awareness and provide practical help. Areas in which support is needed include: travel and / or accommodation to enable attendance at a meeting of the international alliance of MND bodies, and assistance with business planning.

MNDA's challenge as a not-for-profit organisation is lack of money, so in many respects it is still in start-up mode. It needs assistance to supply or purchase equipment. MNDA aims to provide equipment to sufferers at no cost so it runs a free equipment loan service; and financial advice, for example, how to access your super. MND can financially cripple families, especially if the sufferer is the sole income earner.

Captains of industry getting behind the president's charity

Since launching the CPA Australia president's charity, some eminent business leaders have come forward to lend their profile and support. Supporters of the principles behind the president's charity include:

• David Gonski AC, founder of Investec Bank, chairman of Coca-Cola Amatil Ltd and chancellor of the University of New South Wales, among numerous involvements
• Nick Greiner AC, former premier of New South Wales and now prominent in the corporate sector
• Jeffrey Lucy AM, chairman of the Financial Reporting Council and former chairman of ASIC
• Hugh Morgan AC, probably best known for his time as CEO of Western Mining Corporation among many business and community involvements

I passionately believe that together we can make a real difference for MND sufferers.

For further information visit the Alex Malley's president blog.

Reference: May 2008, 78:04, p. 76