Ice Bucket Challenge FAQ's

We are astounded and heartened by the outpouring of support from the global community in response to the ALS/MND Ice Bucket Challenge. The Ice Bucket Challenge has provided both a boost of hope and funds to the MND community. 

Since the inaugural Ice Bucket Challenge in Australia on 10 August 2014, over 60,000 supporters have donated more than $3 million to MND Australia and state MND associations. We thank each and every one of you for getting involved and helping to change the future of ALS/MND. 

 

How are funds raised in Australia from Ice Bucket Challenges being used?

Enhanced care and support services, funding for the national MND registry and new MND research grants are some of the initiatives being funded by Ice Bucket Challenge donations.

Following careful consideration, the MND Australia Board of Directors agreed that enhancing the direct care and support services provided by our members, the state MND associations, to people currently living with MND must be a priority. The wonderful generosity of over 60,000 Ice Bucket Challenge donors will also allow us to bring forward national priorities that will improve the lives of all Australians living with MND.
 
An injection of funding will assist in reinvigorating the Australian Motor Neurone Disease Registry, a clinical database of MND patient information. The information will be used to support research, improve patient care and assist MND associations in better ascertaining and advocating the health and care needs of people living with MND.
 
Plans are also underway to develop an information and awareness tool to assist health professionals in making early diagnoses of MND. This is vital to optimise the health outcomes of people living with MND.
 
Of the funds donated for research, $1.05 million will be provided by the MND Research Institute of Australia (MNDRIA) to support a major three-year project grant for an Australian team that submits the best proposal to investigate the biological basis of human MND with the prospect of developing a therapy for MND. The announcement of the successful team will be made in early 2015.
 
Additionally, Associate Professor Ian Blair from the Australian School of Advanced Medicine at Macquarie University has been awarded the MND Ice Bucket Challenge Grant-in-aid as start-up funding for Australia’s participation in the largest international collaborative genetic study of sporadic MND ever conducted, called Project MinE.
 
 

Can I still take part in the Ice Bucket Challenge?

Although most Ice Bucket Challenge activity drew to an end in 2014, it's never too late to take a drenching for MND! Find out how.

The donation page on this website enables donors to choose to support either the work of MND Australia or research. There is a link to the state MND associations websites for those who would like to donate to support the work of their state MND association.

 

What does MND Australia do?

MND Australia is the national peak advocate for people living with MND.  Together with the six state MND associations we advance, promote and influence MND care and research with a vision to achieving a world free from MND. The MND Research Institute of Australia (MNDRIA) is the research arm of MND Australia. 

MND Australia works to improve the lives of all Australians impacted by motor neurone disease by influencing policy, providing trusted information, and promoting and funding the best research. Read the 2013 – 2014 Annual Review pages of this website for more information on the work we undertake. 
 

What is MND Australia's annual operating budget?

MND Australia's annual budget is typically around $300,000 per year funded by membership fees, unsolicited donations and corporate support. This funds a small team of four part time staff and our national programs related to advocacy, communications, information and education, research grants administration and awareness. 

The Association operates under a federated system comprised of the 6 member state MND associations which are separate, independently run associations with their own budgets and financial statements. However, we are firmly associated by our governance structure, and unified in achieving our mission.
 

How much money does MND Australia spend on research each year?

Research is the only way that we can change the future of motor neurone disease (MND). Every dollar we receive for research is directed to our research arm, the MND Research Institute of Australia, (MNDRIA) and invested in research with the best chance of understanding the causes, developing effective treatments and finding a cure for MND.

Over the last three years we have allocated just over $2 million per annum thanks to the generosity of  the Australian community of MND supporters who provide all of the funds distributed each year by MNDRIA.

 

How can I donate to support the work of my State MND Association?

You can make a donation to the support services provided by state MND associations, via the donation page on the relevant association website. The state MND associations provide a range of services that may include all or some of the following:

  • Information
  • Ongoing support
  • Home visits
  • Assistance in accessing MND Clinics and local services 
  • Equipment or assistance in accessing equipment from government agencies
  • Peer support and education programs
  • Carer workshops and programs
  • Support groups
  • Education sessions and information for health and community care providers
  • Advocacy and influencing
  • Volunteers

 

What is the difference between ALS and MND?

There is no difference they are simply different terms to describe the same disease. 

Motor neurone disease (MND) is the name given to a group of diseases in which the nerve cells (neurones) controlling the muscles that enable us to move, speak, breathe and swallow undergo degeneration and die. MND can be classified into four main types depending on the pattern of motor neurone involvement and the part of the body where the symptoms begin. Amyotrophic lateral sclerosis (ALS) is the most common form of MND.

In the USA and a number of other countries the term ALS is used whilst in Australia, UK, NZ and some other countries we use the term MND.

To find out more, watch this short video.

 

Does MND Australia fund embryonic stem cell research?

MND Australia’s Research Policy states the following:
 
“MND Australia supports research which is legal, has sound scientific rationale and has the potential to bring us closer to finding the cause, treatment or cure for MND.”
 
In the current research climate there is work being done with stem cells which may offer promising avenues for future treatments or a cure for motor neurone disease. This research is currently covered by legislation which is reviewed by Governments from time to time.  
 
Whilst MND Australia recognises that research on embryonic stem cells poses ethical dilemmas for some Australians, it is our belief that most Australians support a proactive attitude to the advancement of research and clinical translation within Australia. MND Australia also recognises that individual members may have a different view, and we accept and embrace individuals right to a different opinion.

MND Australia is not funding any projects that are conducting embryonic stem cell research this year. However, our research committee may decide to award a grant to a researcher conducting this type of research in the future if they are deemed to be a good applicant.      

 

Does MND Australia support animal testing?

MND Australia and the MND Research Institute of Australia do not carry out any research.  They provide grants to fund research projects that have been selected by the national committee of MND research experts as the projects most likely to be successful and to provide benefit for people with MND.  These projects are usually conducted in a University or other research institution and ethics approvals from the institutions are required before the projects can commence.

Some of the MND research projects we are funding in 2014 include animals.  These animals are fruit flies, worms, zebra fish, mice and rats.  These animals have been bred specifically to include MND-causing genes so the cell biology of the effect of these genes can be discovered and potential therapeutic drugs can be tested for efficacy in modifying disease progression. Inevitably the animals are sacrificed at a certain stage of the disease so they can be examined microscopically. 

The discovery of genetic causes of MND and the development of animal models which carry the MND genes have been a major breakthrough in the advancement of MND research worldwide.

We are committed to honouring donor intent. If a donor is not comfortable with a specific type of research, he or she can stipulate that their dollars not be invested in that particular area. Alternatively a donor can choose to support MND Australia's advocacy, information and awareness activities or their state MND association to directly support people living with MND and their families.