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MND Australia is the national voice for people living with motor neurone disease and invests in research, care and advocacy to improve the lives of everyone impacted by MND. When you donate via the links above, your donation will be spent on research, as well as care and advocacy.
However, if you would like your donation to go directly to funding MND research, you can click here to donate your full amount to MND Research Australia, the research arm of MND Australia. At MND Research Australia, we fund world-class research for better treatments, improved care and ultimately a cure for MND.
MND Australia is the national voice for people living with motor neurone disease and invests in research, care and advocacy to improve the lives of everyone impacted by MND.
Through our research arm, MND Research Australia, we fund world-class research for better treatments, improved care and ultimately a cure for MND.
Our national advocacy activities ensure the voices of people living with MND are heard by the Government on the issues that matter: disability support and services, palliative care, aged care, support for carers and research funding.
The diagnosis of motor neurone disease can be devastating and people with MND and their families need access to the highest quality information. Your donation will also enable us to produce national publications and online resources that are crucial for informing people at every stage of the disease, as well as the health professionals who care for them.
MND Australia is a Health Promotion Charity and is registered with the Australian Charities and not-for-profits Commission. ABN – 52 650 269 176, ARBN – 609051792
Leaving a gift in your will has the power to change the future of motor neurone disease. A valid Will allows you to decide how you would like your assets to be distributed. You should seek legal advice from a solicitor or authorised trustee company because it is important your wishes are properly expressed, and that the correct legal wording is used. You can choose to leave a gift in your will to MND Australia or directly to our research arm, MND Research Australia.
For a gift to Motor Neurone Disease Australia, the following wording is appropriate:
"I give (my estate) or (portion/the residue of my estate) or (the sum of $________ ) to the Motor Neurone Disease Association of Australia Inc. (ABN 52 650 269 176). I declare that the receipt of the Institute’s President, Treasurer, Secretary or Executive Director shall be sufficient discharge to my trustees. "
For a gift to Motor Neurone Disease Research Australia, the following wording is appropriate:
"I give (my estate) or (portion/the residue of my estate) or (the sum of $________ ) to the Motor Neurone Disease Research Institute of Australia Inc. (ABN 46 789 710 580) for research into motor neurone disease. I declare that the receipt of the Institute’s President, Treasurer, Secretary or Executive Director shall be sufficient discharge to my trustees."
Fundraising events are a very important and significant source of donations for MND Australia. The simplest way to fundraise is through online fundraising platforms. MND Australia is registered charity with MyCause. You can use the search bar to find MND Australia on MyCause under the 'charity select' when creating your fundraising page. When a donation has been processed a receipt will be automatically sent out to the email address that the donation was made under.
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If you are planning to hold an event and to collect funds on behalf of MND Australia or MND Research Australia then you will need to apply for an authority to fundraise. Contact MND Australia at [email protected] or call 02 8287 4980; or MND Research Australia at [email protected] or call 02 8287 4989 for information on how to do this.
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If you do not feel comfortable donating online, you can donate over the phone, or by direct bank transfer.
To donate via the phone, call MND Australia on 02 8287 4980 or MND Research Australia on 02 8287 4989 to provide your credit card details.
To donate via bank transfer to MND Australia, please follow the steps below:
Transfer your donation to MND Australia (BSB: 062-171; Account: 010227916). Please include a reference in the transfer (such as your name or organisation name).
Get in touch with us to advise us of your donation, so that we are able to provide you with a receipt. You can call us on 02 8287 4980, fill in this form and post or email it, or email your details to [email protected]
To donate via bank transfer to MND Research Australia, please follow the steps below:
Transfer your donation to MND Research Australia (BSB: 062-152; Account: 00902053). Please include a reference in the transfer (such as your name or organisation name).
Get in touch with us to advise us of your donation, so that we are able to provide you with a receipt. You can call us on 02 8287 4989, fill in this form and post it, or email your details to [email protected]
Motor neurone disease (MND) – causes, symptoms and treatments
What is MND?
Motor neurone disease (MND) is the name for a group of diseases. These diseases affect nerves known as motor nerves, or motor neurons. In MND, these neurons degenerate and die. This causes the muscles to become weaker and weaker. This eventually leads to paralysis. The MND disease group includes:
Lou Gehrig's disease, also known as amyotrophic lateral sclerosis (ALS)
progressive muscular atrophy (PMA)
progressive bulbar palsy (PBP)
primary lateral sclerosis (PLS)
Kennedy's disease, also known as spinal and bulbar muscular atrophy (SBMA)
MND is an uncommon disease. The average age that people are diagnosed with MND is 58 years.
These diseases affect nerves known as motor nerves, or motor neurons.
What are the symptoms of MND?
MND is a progressive disease that often starts slowly and gets worse over time. Symptoms usually start on one side of the body before spreading. Usually, the first things people notice are:
weakness in their hands and grip
weakness in their legs, and a tendency to trip
weakness of their shoulder, making lifting difficult
cramps and muscles twitching
Later on, people with MND:
become very weak and have little or no movement
have trouble talking, breathing and swallowing
A few people with MND develop a type of dementia.
MND will not affect your ability to:
What causes MND?
The exact cause of MND is not known. You can't catch MND from somebody.
Generally, MND is believed to be caused because of a combination of environmental, lifestyle and genetic factors. Most cases of MND develop without an obvious cause.
Around 1 in 10 cases are 'familial', meaning the condition is inherited. This is due to a genetic mutation, or an error in the gene.
If you have an MND-related genetic mutation, your children have a 50/50 chance of inheriting that MND-related genetic mutation.
If someone in your family has MND, other people in the family can be tested for the genetic mutation. A test is arranged after you have met with a genetic counsellor. You will also receive support and counselling about the possible test results. The test is usually done by a blood sample.
People who inherit the genetic mutation have a high chance of developing MND. But, it is important to remember that not all people with the genetic mutation will develop MND.
When should I see a doctor?
If you notice any of the symptoms of early MND, you should see your doctor. If anyone in your family has MND, you can be tested by your doctor for the genetic mutation.
How is MND diagnosed?
MND can be hard to diagnose when the symptoms first appear. Your symptoms may be mild and non-specific and could be related to other conditions. It is important to see a doctor if your symptoms don’t get better.
There is not one test for diagnosing MND. You may need to have a range of tests done. Some of these will eliminate other conditions.
Your doctor may refer you to a neurologist (a brain and nerve doctor) who will examine you and do various tests. These may include:
nerve conduction studies to measure how well your nerves and muscles are working
How is MND treated?
A person with MND will usually require assistance from different specialists, such as:
home care nurses
There is no cure for MND. However, with the help of specialists, a lot can be done to:
ease your symptoms
maintain your quality of life
keep you as mobile as possible for as long as possible
You may require the help of devices and home modifications to assist with movement and function. These might include:
Most people with MND die within 2 to 3 years of developing the condition. However, some people can live a long time.
See MND Australia's guide about end of life care for people living with MND.
Can MND be prevented?
Because there is no known cause of MND, there is nothing you can to do prevent it.
What are the complications of MND?
The complications of MND relate to late-stage disease. This can involve respiratory failure and paralysis.
Resources and support
The MND Associations in each state provides individualised support to people with MND.
To find the MND Association in your state, visit the MND Australia website. The website also has a range of resources for people with MND and their family and friends.
MND Australia (Types of MND), MND Australia (Living with MND), MND Australia (Familial MND and genetic testing), RACGP (Motor neurone disease – caring for patients in general practice), The Medical Journal of Australia (Motor neurone disease: progress and challenges), AJGP (Motor neuron disease: The last 12 months)
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“I don’t expect anything, I just take everything that is possible from life”
How the disease is diagnosed and supported by patients with amyotrophic lateral sclerosis.
On June 21, the world annually celebrates the day of the fight against amyotrophic lateral sclerosis (ALS), and in Russia the entire first month of summer is devoted to informing about this neuromuscular disease.
A rare and not fully understood disease, ALS causes motor neuron death and rapid paralysis. In patients, all motor functions gradually fade away, including the ability to swallow and breathe. Researchers are actively working to develop a therapy that can effectively curb muscle regression, but until it is found, people with ALS can only adhere to special supportive recommendations. About what symptomatic therapy is prescribed for ALS and what else is important to know about this disease, said Ph.D., Vera Demeshonok, neurologist, expert of the "Live Now" charitable foundation.
Diagnosis by exclusion
The diagnosis of amyotrophic lateral sclerosis, as a rule, takes from several months to several years. Most often, patients turn to a neurologist on an outpatient basis - they come to a polyclinic or a private medical center with complaints of weakness in the arm, leg, or a gradual deterioration in speech.
“Patients are prescribed studies depending on the localization of symptoms to search for their cause: MRI, electroneuromyography, laboratory tests, sometimes a study of cerebrospinal fluid. Some studies can be performed on an outpatient basis, but often with suspicion of ALS they are sent to a hospital. In Russia, there are many large federal centers and city hospitals with departments that are deeply involved in the diagnosis of neuromuscular, neurodegenerative diseases. Of course, the purpose of the examination is to identify other diseases: tumors, myelopathy, hereditary diseases, and others, and ALS is a diagnosis of exclusion. At present, there are still no accurate reliable tests in the world to detect this disease,” says neurologist Vera Demeshonok.
The complexity of diagnosis is one of the reasons why the diagnosis of ALS can be misdiagnosed. According to foreign studies, among patients who were referred for additional examination to specialized centers, in 20% of cases the diagnosis of ALS was made incorrectly, in half of the cases it was about potentially curable diseases, notes Vera Demeshonok.
Treatment, nutrition and exercise
Despite the active development and testing of several lines of drugs for ALS, doctors still cannot significantly influence the life expectancy of patients with this disease. The existing therapy is aimed at relieving pain and improving the quality of life: for pain and muscle spasms, painkillers and anticonvulsants are prescribed, for shortness of breath - benzodiazepines, opioids - separately or together with non-invasive ventilation of the lungs. To normalize the emotional state, antidepressants and anti-anxiety drugs are prescribed so that a person can better adapt and be able to make informed decisions, including on the amount of assistance.
When motor neurons die - the nerve cells that send signals to the muscles - the muscles gradually lose their function, so patients should act on the principle of "use it or lose it." Patients can afford moderate physical activity, preferably under the supervision of a specialist, since everyone has different physical abilities, localization and degree of movement disorders.
“Exercise and stretching can help maintain independence longer, reduce pain, muscle tone and spasms. Overloading is not recommended! Unfortunately, it is not possible to restore already weakened muscles,” Vera Demeshonok explains.
ALS often causes weight loss and muscle atrophy. To slow down this process, it is important to eat right. Patients are advised to follow a hypercaloric diet in order to maintain normal weight and physical activity for as long as possible.
Along with nutrition, it is also important for the patient not to forget about fluid intake - it is advisable to drink an average of 1.5 liters of water and other drinks daily. This is necessary for the functioning of the muscles and the normal functioning of the gastrointestinal tract.
The story of the patient Dmitry Donskoy: when you need to live here and now
Dmitry Donskoy from the village of Yandyki, Astrakhan Region, has been suffering from ALS for many years. The diagnosis was made when he was twenty-four years old. By that time, the young man graduated from the university with a degree in Oil and Gas Geology Engineer and got a job in Astrakhan, and then Dmitry was invited to the Astrakhangazgeofizika enterprise for the position of a geophysicist-interpreter. In parallel, personal life also developed: the man got married, his son was born. The disease manifested itself suddenly. According to Dmitry, in 2005 he picked up a flashlight and could not turn it on with the thumb of his left hand. Later, he noticed that it was becoming increasingly difficult to work with his fingers, it was difficult to open his fist. When the muscles on his arm seemed to fail, the man turned to the doctor. The diagnosis was not made immediately. The first assumption was made by an experienced neuropathologist who examined Dmitry during a medical examination in the army. Another six months passed, and ALS was finally confirmed.
“I went to work - as if on purpose, a medical encyclopedia fell into my hands, where I read about this illness. Like thunder from a clear sky. <...> Shock, hair on end, as if by an electric shock, it hit the heels. Can't describe those first feelings. I didn’t hear anyone anymore ... ”, Dmitry said in his interview to the Limansky Vestnik newspaper.
In 2009, a man had to retire from work due to disability. To cope with a difficult psychological state and occupy himself in his free time, he studied graphic editors and began working remotely as a designer, and became interested in compiling his family's genealogy. A special device, the Tobii eye tracker, helps Dmitry cope with the computer and smartphone, thanks to which he can work with graphics and type with his eyes.
Dmitry works in graphic editors, controlling a computer with the help of a special device - an eye tracker.
“For me, this is not only a means of communication or, as it is now fashionable to say, communication with the outside world, but also an opportunity to feel like an independent person with completely unlimited possibilities. I can independently make purchases, make payments, defend my rights when necessary, express my will, work in graphic editors and other programs. Tobii also gives me the opportunity to be useful, to help others, and this is very important. Full control of your PC and smartphone with your eyes. I can’t even imagine what I would do without all this,” says Dmitry.
Today, Dmitry is one of the wards of the Live Now charity foundation, which provides comprehensive support to patients with ALS. The organization accompanied the man on the issue of obtaining respiratory equipment in palliative status and provided for temporary use an expectorant until it was received by law from the state, as well as a phrase book and an alphabet. Now Dmitry himself takes part in the development of the patient community on the Vkontakte social network, shares news about the treatment of the disease, gives interviews and always supports others:
“I believe that the meaning of life lies in life itself, in what you leave behind, how you will be remembered. Each person has his own meaning, and each determines it for himself. I do not expect anything, I just live and take from life what is possible. And I also have a dream — to visit the sea!”
ALS treatment prospects
So far, there is no effective treatment that affects the cause of ALS development in the world, but researchers are developing new drugs and testing the effectiveness of existing ones. For example, reldesemtiva. Its third phase of clinical trials will be conducted within a year. Participants expanded to include patients from North America, Europe, and Australia will receive the drug for 48 weeks. Reldesemtive is a small molecule designed to increase the ability of muscles to respond to weak nerve signals. It is believed that due to the activation of the troponin protein in fast-twitch skeletal muscle fibers, the drug will be able to slow down progressive muscle weakness.
Recently, ALS has received more and more attention in the global medical community. So the American medical regulator FDA recently released a new action plan for the management of patients with neurodegenerative diseases, including ALS. This action plan is a five-year strategy to improve the lives of patients through the development of new treatment approaches. This means that ALS patients can hope for a new “breakthrough” therapy soon.
See also: How to get respiratory equipment for rare diseases
Cyanobacteria kill nerve cells with a fake amino acid
Effective drugs against neurodegenerative diseases can be found with the help of blue-green algae, which synthesize a toxic amino acid that is incorporated into proteins - this transformation leads to the death of motor neurons.
Blue-green algae - cyanobacteria - the oldest group of living organisms, over billions of years of evolution, adapted to the most diverse living conditions on the planet. The ability to convert carbon dioxide and nitrogen in the air into substances necessary for growth and reproduction allows them to settle in the most seemingly lifeless places, for example, on bare rocks. They survive even in chlorinated tap water.
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Getting into favorable conditions - reservoirs rich in organic matter, cyanobacteria multiply quickly enough, filling the space with themselves and causing a phenomenon familiar to many, called "water bloom". There are useful and even edible species among them, such as spirulina. There are also poisonous ones.
Poisonous organisms synthesize a neurotoxin, the amino acid β-N-methyl-amino-50-alanine (BMAA).
This amino acid is not involved in the formation of protein molecules, but when it enters the human body, it can disable motor neurons, causing irreversible damage to the central nervous system.
Motor neuron disease ( amyotrophic lateral sclerosis , also known as Lou Gehrig's disease or Charcot's disease) is an incurable terminal neurodegenerative disease that affects people aged 40-60 years. The incidence in the world is two cases per year per 100 thousand people. The disease kills the motor neurons of the brain and spinal cord and gradually leads to paralysis without affecting the patient's intelligence. More than 9In 0% of cases, the causes of the disease are unknown and treatments are unclear.
Among the people suffering from this disease, the famous physicist Stephen Hawking is one of the few whose diagnosis was confirmed and his condition stabilized.
Scientists from Australia tried to figure out what exactly happens when a toxic amino acid from cyanobacteria enters the human body. For Australia, this problem is quite relevant, since the country's waterways are often subjected to aggressive invasion of blue-green algae. The most memorable was the "water bloom" that spread in the summer of 1991/1992 for a distance of more than 1000 kilometers.
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The relationship between damage to motor neurons and the consumption of food or water contaminated with cyanobacteria was established quite a long time ago, in the 70s of the last century, but the mechanism of action of the toxin remained unclear.
BMAA was first discovered on 1972 in the body of the native Chamorro people living on the island of Guam, who, as it turned out, are 100 times more likely to get Charcot's disease than other inhabitants of the planet. Chamorros use sago, the starch of the sago palm, as food. It is extracted from the core of plant stems. Raw sago is poisonous due to its high BMAA content. The toxin is neutralized by special treatment. Another food tradition of this people is the eating of bats, which also feed on cycads. That is, a fair share of BMAA Chamorros receive along with their usual food.
Researchers have since begun to pay closer attention to motor neuron disease outbreaks among people living near blooming waters, including those who ate shellfish that accumulated toxic amounts of cyanobacteria, and among NATO soldiers who fought in the Persian Gulf in 1990-1991.
Researchers from University of Technology Sydney led by Ken Rogers, in collaboration with botanist Paul Cox and scientists from the Institute of Traditional Medicine of Wyoming (USA) found that
toxic BMAA imitates another amino acid in the human body - serine, integrating instead of it into ordinary proteins synthesized by our body.
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Such erroneous proteins accumulate over time and cause cell death. The results of 's work are published in the journal PLOS ONE .
“A common feature of all neurodegenerative diseases is that certain proteins begin to accumulate in nerve cells, and in huge amounts,” explained Rachel Dunlop, first author of the article. – When the overload of the cell with these proteins reaches critical values, it commits suicide, suicide. In our study, we have shown that BMAA can serve as a trigger for this process.”
In order to study the mechanism of action of the toxic amino acid, Australian scientists used human cell lines as a model system.
As it turns out, a sufficient amount of L-serine, the correct amino acid that BMAA competes with for its place in the protein molecule, can prevent the body from producing the wrong protein and reduce the likelihood of developing a disease.
The authors of the study believe that L-serine may become a new effective drug against this group of neurodegenerative diseases.
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