A cure for the genetic forms of MND is close, probably 3 years away, and we are hoping for a cure for the sporadic form (90% of patients) within the decade.”
There's no cure for motor neurone disease, but treatment can help reduce the impact the symptoms have on your life. You'll be cared for by a team of specialists and a GP.
A new drug, called Amantadine Hydrochloride, was added to the trial in April 2023. New drugs will be selected for investigation in MND-SMART based on continuous review of constantly updated scientific evidence as well as findings from state-of-the-art human stem cell based drug discovery platforms.
Spontaneous remission of non-symptomatic MND is extremely rare.
New research shows evidence of MND-associated proteins in the gut. A new study published in The Journal of Pathology: Clinical Research has found that the same protein, pTDP-43, that are linked to motor neurone disease can be found in the gut years before any MND symptoms occur.
Nutrients. There is some evidence that motor neurones become more likely to develop MND because of a lack of nutrients. One form of such nutrients is a group of chemicals called 'neurotrophic factors' (meaning 'nerve nourishing factors').
Researchers have hypothesized that vigorous physical activity might increase exposure to environmental toxins, facilitate the transport of toxins to the brain, increase the absorption of toxins, or increase the athlete''''s susceptibility to motor neuron disease through added physical stress.
Typically, the longer you live, the more likely you are to develop the condition. If you have a parent with MND with no other family history of the disease, you're at a slight increased risk of MND of about 1.4%. The risk to the general population of MND is about 0.3%.
Most people with MND have the sporadic form and so it is not a genetic or inherited form of the condition and so will not be passed on in families. The inherited form of MND can be passed on in future generations and so can affect multiple family members over time.
Certain dietary factors, such as higher intake of antioxidants and vitamin E, have been shown, at least in some studies, to decrease the risk of MND. Interestingly, increased physical fitness and lower body mass index (BMI) have been shown to be associated with a higher risk of MND.
Although the use of stem cells as a treatment for MND may eventually be possible, the general perception among scientists and clinicians is that research in this area is not yet sufficiently well advanced.
Life expectancy after diagnosis is one to five years, with 10 per cent of people with MND living 10 years or more. The needs of people with MND are complex and vary from person to person.
Is MND painful? Motor neurones do not transmit or modify pain signals, so the disease itself is not inherently painful. 2 However, pain may be experienced as the disease progresses. Pain may occur at any stage of MND, including early on, with no relationship between pain intensity and length of time since diagnosis.
Astrophysicist Stephen Hawking, whose ALS was diagnosed in 1963, had the disease for 55 years, the longest recorded time one had the disease. He died at the age of 76 in 2018.
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.
Many of the people we talked to had been experiencing symptoms for months or even years before finally getting a diagnosis. Some lived with their symptoms for a long time before deciding to go to their GP, perhaps putting them down to stress, old age, or injury. (See 'First symptoms of MND').
Those carrying a fault in a gene leading to MND have a 50 percent (one in two) chance of passing the genetic error on to their children. However, the risk of someone carrying the faulty gene actually developing MND may be lower than 50 percent in some cases.
There is a 1 in 300 risk of getting MND across a lifetime. It can affect adults of any age, but is more likely to affect people over 50.
MND Association funded researchers have shown that high levels of physical activity can be linked to the development of MND in some people who also have a l genetic risk. It is possible that some high-performance athletes, such as rugby players, may carry a different genetic risk to the general population.
This study confirms that in some people, frequent strenuous exercise leads to an increase in the risk of MND. “It is important to stress that we know that most people who undertake vigorous exercise do not develop MND. Sport has a large number of health benefits and most sportsmen and women do not develop MND.
An international team of investigators has discovered that an inorganic polyphosphate released by nerve cells known as astrocytes in people with amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD) contributes to the motor neuron death that is the signature of these diseases.
MND is not a common disease. It affects adults and sometimes younger adults. You are likely to be more than 40 years old at diagnosis, and most people with MND are aged between 50 and 70. Men are affected almost twice as often as women, but this varies.
You are considered at risk with COVID-19 if you have a chronic neurological disease, such as motor neurone disease (MND). New strains of COVID-19: these pass on more easily, but are not thought to cause a higher risk of complications.
Symptoms. The different types of MND cause similar symptoms and have three stages: early, middle, and advanced. The diseases progress at different speeds and vary in severity.