Welcome

MND NSW provides information, support and education for people living with motor neurone disease, their families, friends and carers in NSW, ACT, the Gold Coast and NT. We also provide information and education about motor neurone disease for health, community and residential care professionals.

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The Lighthouse Project is a Phase 2 study of antiretroviral therapy aiming to determine the safety and tolerability of Triumeq and provide preliminary data on whether the drug can slow down progression of MND. The investigators hope to start recruiting for this study in September 2016. The study will be conducted at three sites in Sydney (The University of Sydney, Macquarie University and Westmead Hospital) and one in Melbourne (Calvary Healthcare Bethlehem Hospital) with ten participants who meet certain inclusion criteria from each site.

People’s life experiences can tell a powerful story. This story can teach others about the meaning of these experiences, and how they affect a person’s life. Researcher Sarah Remm from the University of Wollongong is currently looking for people diagnosed with MND to share their story about their diagnosis experience. Your story will contribute to a study exploring diagnosis experiences of MND.

Two papers published in the journal Nature Genetics on 25 July provide yet more insight into genes predisposing people to MND. Three new genes known as C21orf2, MOBP and SCFD1 have been linked to MND, and a fourth gene, NEK1, has been confirmed as an MND susceptibility gene. These genes join the growing list of already identified genes linked to MND.

Each year MND NSW provides support, care and equipment to people with MND. MND NSW also provides research funding – nearly $600,000 over the past two years. This year we have included a special grant, the Dr Paul Brock MND NSW Research Grant. As a MND NSW Board member and Vice Patron, Paul’s tireless advocacy and drive helped inspire many researchers and will, one day lead to a world free from MND.

Motor neurone disease has touched the lives of many families. Karalee Baker has a history of MND in her family, with her maternal great grandmother, maternal grandmother and father dying from MND. Karalee’s mother was also diagnosed with MND in 2014. With a history of MND on both sides of their family, Karalee and her siblings have a higher chance of being diagnosed with the disease sometime in their lives.

Karalee is determined to raise awareness of MND and raise funds for answers into the disease. She will run 45 kilometres from Queanbeyan to Gundaroo on the day of the Gundaroo Music Festival, 8 October 2016, and is expected to arrive at at Gundaroo around 2pm. A fundraising page has been set up to give us all the opportunity to donate to the cause.

We wish Karalee the very best in her journey, and urge you to dig deep and support her quest to raise funds for MND research.

To learn more about Karalee’s journey, and donate, head to https://mndspirit.everydayhero.com/au/karalee

Get Involved

Some people like to help by volunteering to be involved in MND awareness-raising, fundraising or administration activities. Others help by organising community events to raise funds for MND care, support and research. This section lists some ideas for your involvement.

Many people choose to support the work of MND NSW by making a tax-deductible donation, buying some MND NSW merchandise, sponsoring a participant in a community event, donating goods or services, or by remembering MND NSW in their Will. More information about getting involved.

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Do you have a great idea for an event or activity that will raise funds for motor neurone disease care, support or research?

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About us

What is MNDNSW and what do we do?

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Find out more about MND

Resources for families and health professionals

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Support our work. Buy MND NSW merchandise here.

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Including MND NSW in your Will

Leaving MND NSW a gift in your Will can make all the difference to people living with motor neurone disease.

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