This research update is produced by the MND Research Institute of Australia - the research arm of MND Australia. Read the latest MND research news.
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.
“Cleared up some doubts”, was one participant’s comment after the MND NSW Ask the Experts Forum at West Ryde in August. This Forum, held annually, aims to provide people with MND, their family and friends the opportunity to hear from experts in the fields of MND research and neurology and to ask questions.
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 from each site who meet certain inclusion criteria.
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.
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.