Materiały źródłowe

• #1 Motor neurone disease (MND)

  https://www.nhs.uk/conditions/motor-neurone-disease/

  There’s currently no cure for motor neurone disease (MND). But there are treatments that can ease your symptoms and help you have the best quality of life possible. […] The type of treatment you’ll be offered will depend on your symptoms and the type of MND you have. You’ll probably need different treatments over time. […] A team of healthcare professionals will give you the support you need. The team may include a specialist nurse, a brain and nerve specialist (neurologist), a physiotherapist and an occupational therapist. […] Treatments you may have include: medicines to help ease symptoms, such as muscle stiffness or cramps, drooling and breathlessness; a medicine called riluzole if you have amyotrophic lateral sclerosis (ALS), which can help slow down its progression. […] You’ll also be offered treatment and support for the symptoms of MND. Every person’s needs will be different depending on their symptoms.

• #2 Diagnosis and management of motor neurone disease

  https://pmc.ncbi.nlm.nih.gov/articles/PMC2270983/

  Motor neurone disease is a devastating illness which leads to progressive paralysis and eventual death. […] We will discuss the presentation of motor neurone disease in primary care and update non-specialists on progress with regards to life prolonging interventions, better control of disease symptoms, and an increased understanding of disease mechanisms. […] Riluzole is the only drug identified to have a beneficial effect on survival, following a double blind, randomised placebo controlled trial in patients with the common amyotrophic lateral sclerosis variant of motor neurone disease. […] The greatest advance in recent years in treating motor neurone disease has been the discovery of the beneficial effects of non-invasive ventilation, in which the patient uses a mask ventilator system (usually bilateral positive airway pressure) overnight during sleep.

• #3 Diagnosis and management of motor neurone disease

  https://pmc.ncbi.nlm.nih.gov/articles/PMC2270983/

  Motor neurone disease is a devastating illness which leads to progressive paralysis and eventual death. […] We will discuss the presentation of motor neurone disease in primary care and update non-specialists on progress with regards to life prolonging interventions, better control of disease symptoms, and an increased understanding of disease mechanisms. […] Riluzole is the only drug identified to have a beneficial effect on survival, following a double blind, randomised placebo controlled trial in patients with the common amyotrophic lateral sclerosis variant of motor neurone disease. […] The greatest advance in recent years in treating motor neurone disease has been the discovery of the beneficial effects of non-invasive ventilation, in which the patient uses a mask ventilator system (usually bilateral positive airway pressure) overnight during sleep.

• #4 Treatments and medication | MND Association

  https://www.mndassociation.org/support-and-information/health-and-social-care-services/treatments-and-medication

  For assessment of your needs, and guidance on speech therapies, techniques, voice banking and communication aids, ask your GP for a referral to a speech and language therapist who has experience of working with MND. […] Riluzole is the only drug currently licensed for the treatment of MND in the UK and approved for use by the NHS. […] It is not a cure for MND, but clinical trials showed a modest impact on survival for people with MND, where use was suitable. […] Medication may be advised where suitable, to ease symptoms and improve quality of life. […] The Department of Health advises getting a flu jab if you live with a chronic disease, including motor neurone disease (MND).

• #5 Motor Neurone Disease Medication: Riluzole | MND Australia | MND Australia

  https://www.mndaustralia.org.au/mnd-connect/living-with-mnd/medication-for-mnd

  Medication for MND […] Medications for MND may assist in the following ways: by slowing down progression of MND (Riluzole and Radicava) […] Riluzole (also known as Rilutek) can slow progression of amyotrophic lateral sclerosis (ALS) and progressive bulbar palsy (PBP), the most common types of MND. Recent research suggests that taking Riluzole may prolong survival by 6 to 19 months. It is best to start taking Riluzole soon after diagnosis to receive the greatest benefit. […] Riluzole blocks the release of a neurotransmitter called glutamate. […] In Australia, Riluzole is available through the Pharmaceutical Benefits Scheme (PBS). […] Riluzole can affect liver function. […] Edaravone is the active ingredient in a treatment sold under the product name RADICAVA. […] Results suggested it slowed the progression in a small group of people with ALS, with the potential to help these people preserve function longer.

• #6 Motor Neurone Disease Medication: Riluzole | MND Australia | MND Australia

  https://www.mndaustralia.org.au/mnd-connect/living-with-mnd/medication-for-mnd

  Medication for MND […] Medications for MND may assist in the following ways: by slowing down progression of MND (Riluzole and Radicava) […] Riluzole (also known as Rilutek) can slow progression of amyotrophic lateral sclerosis (ALS) and progressive bulbar palsy (PBP), the most common types of MND. Recent research suggests that taking Riluzole may prolong survival by 6 to 19 months. It is best to start taking Riluzole soon after diagnosis to receive the greatest benefit. […] Riluzole blocks the release of a neurotransmitter called glutamate. […] In Australia, Riluzole is available through the Pharmaceutical Benefits Scheme (PBS). […] Riluzole can affect liver function. […] Edaravone is the active ingredient in a treatment sold under the product name RADICAVA. […] Results suggested it slowed the progression in a small group of people with ALS, with the potential to help these people preserve function longer.

• #7 Motor neurone disease (MND) | Better Health Channel

  https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/motor-neurone-disease

  Motor neurone disease (MND) is still incurable, but not untreatable many symptoms can be managed. […] MND is still incurable, but it is not untreatable, as many symptoms can be managed. The drug riluzole available on the Pharmaceutical Benefits Scheme has been demonstrated in clinical trials to prolong survival by several months and may help people to remain in the milder phase of the disease for longer. Research has shown that people live better and longer under the care of a multidisciplinary team. Interventions such as assistance with nutritional intake and breathing improve quality of life. Costly and unproven therapies are sometimes recommended by well-meaning people. Seek professional advice before trying unproven therapies.

• #8 Motor neurone disease (MND) | NHS inform

  https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/motor-neurone-disease-mnd/

  Although theres no cure for MND, there are treatments available to help relieve the symptoms. […] A team of healthcare professionals will work together to help care for you. This multidisciplinary team typically includes: a neurologist and an MND care specialist, a specialist in breathing (respiratory specialist), physiotherapists to advise on mobility aids, occupational therapists to assess the need for adaptations to living environments, speech and language therapist to provide help with communication and swallowing, dieticians to support nutrition. […] Riluzole is the only licensed medication in the UK thats shown a survival benefit for people with MND. Riluzole is thought to slow down the damage to the motor neurone cells by reducing their sensitivity to the nerve transmitter glutamate.

• #9 Treatments for MND – Leeds Teaching Hospitals NHS Trust

  https://www.leedsth.nhs.uk/services/leeds-motor-neurone-disease-mnd-care-centre/your-condition-treatment/treatments-for-mnd/

  Unfortunately there is at present no known cure for MND but treatments are used to improve symptoms. Riluzole is a medication, which has been shown to have a small effect in slowing down the progression of MND. It is taken in tablet form twice each day. A small number of people experience side effects such as tiredness and lethargy which often passes after a short time. […] In a small number of people the medication can also cause problems with liver function and therefore blood tests need to be done on a regular basis. It can also make people more prone to getting infections and therefore you should see your GP if you have any signs of infection. The majority of people do not experience any side effects but if they do, consideration should be given whether this treatment should continue.

• #10 Treatment and medication – MND NZ

  https://mnd.org.nz/support-information/health-and-social-care/treatment-and-medication/

  Riluzole is the only drug funded for the treatment of MND in New Zealand. […] Riluzole, 100mg per day, results in a benefit of about 9% gain in the probability of surviving one year after treatment allocation, and increased median survival from 11.8 to 14.8 months. […] It is important to know that the loss of functions caused by MND will continue despite the treatment. […] Not all patients tolerate the treatment but, overall, tolerance is satisfactory. […] Many people with MND find treatment with complementary therapies helpful. […] Complementary therapies will complement existing medical care and should not be seen as a replacement to current prescribed medication.

• #11 Motor neurone disease (MND) | Better Health Channel

  https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/motor-neurone-disease

  Motor neurone disease (MND) is still incurable, but not untreatable many symptoms can be managed. […] MND is still incurable, but it is not untreatable, as many symptoms can be managed. The drug riluzole available on the Pharmaceutical Benefits Scheme has been demonstrated in clinical trials to prolong survival by several months and may help people to remain in the milder phase of the disease for longer. Research has shown that people live better and longer under the care of a multidisciplinary team. Interventions such as assistance with nutritional intake and breathing improve quality of life. Costly and unproven therapies are sometimes recommended by well-meaning people. Seek professional advice before trying unproven therapies.

• #12 Motor Neurone Disease Medication: Riluzole | MND Australia | MND Australia

  https://www.mndaustralia.org.au/mnd-connect/living-with-mnd/medication-for-mnd

  Medication for MND […] Medications for MND may assist in the following ways: by slowing down progression of MND (Riluzole and Radicava) […] Riluzole (also known as Rilutek) can slow progression of amyotrophic lateral sclerosis (ALS) and progressive bulbar palsy (PBP), the most common types of MND. Recent research suggests that taking Riluzole may prolong survival by 6 to 19 months. It is best to start taking Riluzole soon after diagnosis to receive the greatest benefit. […] Riluzole blocks the release of a neurotransmitter called glutamate. […] In Australia, Riluzole is available through the Pharmaceutical Benefits Scheme (PBS). […] Riluzole can affect liver function. […] Edaravone is the active ingredient in a treatment sold under the product name RADICAVA. […] Results suggested it slowed the progression in a small group of people with ALS, with the potential to help these people preserve function longer.

• #13 Motor Neurone Disease Medication: Riluzole | MND Australia | MND Australia

  https://www.mndaustralia.org.au/mnd-connect/living-with-mnd/medication-for-mnd

  Research suggests Edaravone has most benefit when used early. […] RADICAVA can only be prescribed to people with ALS (the most common form of MND) and must be first prescribed within two years of symptom onset. […] Tofersen reduces activity of the SOD1 gene and decreases levels of the protein. It is the first gene-related therapy to be approved for treatment of MND. […] People living with MND may also use medications to manage symptoms associated with the disease. […] Scientists around the world continue to do research to learn about MND. Part of this research is to develop medications that may slow, and one day cure, the disease. […] Finding effective drug treatments for MND takes a lot of time and resources. […] A good place to learn about alternative treatments is to visit the ALS Untangled website, which helps people find better quality health information online. […] Checking helps make sure any remedy or medication is safe to take with your current medication.

• #14 A turning point for the treatment of motor neurone disease | This is the future | The University of Sheffield

  https://www.sheffield.ac.uk/future/mndtreatment

  We led a Phase 3 clinical trial of an investigational drug for a type of motor neurone disease. The results of the trial showed significant improvements in patients symptoms, with one patient in a wheelchair later able to walk without sticks. […] An international clinical trial led by Professor Dame Pamela J Shaw in the UK has been shown to slow down progression of a type of motor neurone disease and could be a turning point for patient care. […] The results of a Phase 3 clinical trial showed significant improvements in patients symptoms after 12 months, with one patient in a wheelchair at the start of the trial now able to walk without sticks. […] Researchers from the Sheffield Institute for Translational Neuroscience (SITraN), the Neuroscience Institute and NIHR Sheffield Biomedical Research Centre (BRC), found that patients with a faulty SOD1 gene reported better mobility and lung function a year after taking the investigational drug tofersen, with some patients experiencing a slower progression of symptoms.

• #15 'Truly remarkable’ drug helps motor neurone disease

  https://www.bbc.com/news/health-62851186

  Scientists say they have slowed and even reversed some of the devastating and relentless decline caused by motor-neurone disease (MND). […] The treatment works in only 2% of patients but has been described as „truly remarkable” and a „real moment of hope” for the whole disease. […] The MND Association said there was „mounting confidence” in the therapy. […] The trial on 108 people, funded by pharmaceutical company Biogen, used an innovative type of medicine called gene silencing. The drug tofersen effectively mutes the defective DNA so less SOD1 is produced. […] After a year, however, it was slowing the pace of the disease – and some patients’ symptoms improved. […] For Prof Dame Pamela Shaw, the director of the Neuroscience Institute, in Sheffield, and a veteran of more than 25 clinical trials in the disease, this was something incredible.

• #16 Promising MND drug helps slow disease progression and benefits patients physically | Neuroscience Institute | The University of Sheffield

  https://www.sheffield.ac.uk/neuroscience-institute/news/promising-mnd-drug-helps-slow-disease-progression-and-benefits-patients-physically

  Scientists believe a new genetically-targeted therapy to treat motor neurone disease (MND) could be a turning point for patient care, after the results of a Phase 3 clinical trial showed significant physical benefits for patients after 12 months. […] A Phase 3 clinical trial of the investigational drug tofersen in patients with MND caused by the faulty SOD1 gene, has shown it can slow and reduce progression of the disease. […] Patients on the trial reported better mobility and lung function after 12 months. […] Researchers from the Sheffield Institute for Translational Neuroscience (SITraN) found that patients with a faulty SOD1 gene – responsible for two per cent of MND cases – noticed that the progression of their symptoms slowed down 12 months after taking the investigational drug tofersen.

• #17 A turning point for the treatment of motor neurone disease | This is the future | The University of Sheffield

  https://www.sheffield.ac.uk/future/mndtreatment

  We led a Phase 3 clinical trial of an investigational drug for a type of motor neurone disease. The results of the trial showed significant improvements in patients symptoms, with one patient in a wheelchair later able to walk without sticks. […] An international clinical trial led by Professor Dame Pamela J Shaw in the UK has been shown to slow down progression of a type of motor neurone disease and could be a turning point for patient care. […] The results of a Phase 3 clinical trial showed significant improvements in patients symptoms after 12 months, with one patient in a wheelchair at the start of the trial now able to walk without sticks. […] Researchers from the Sheffield Institute for Translational Neuroscience (SITraN), the Neuroscience Institute and NIHR Sheffield Biomedical Research Centre (BRC), found that patients with a faulty SOD1 gene reported better mobility and lung function a year after taking the investigational drug tofersen, with some patients experiencing a slower progression of symptoms.

• #18 Promising MND drug helps slow disease progression and benefits patients physically | Neuroscience Institute | The University of Sheffield

  https://www.sheffield.ac.uk/neuroscience-institute/news/promising-mnd-drug-helps-slow-disease-progression-and-benefits-patients-physically

  Although a significant clinical improvement was not found at the primary endpoint of the study at 28 weeks, when the trial was extended to 52 weeks, notable changes in patients motor function and lung function were reported. […] Results of the trial, published in the New England Journal of Medicine, show that biomarkers in patients’ spinal fluid showed a reduction in the SOD1 and neurofilament protein levels after taking tofersen for six months, suggesting that the treatment successfully hits the therapeutic target and reduces loss of motor neurones which may allow them to start regenerating connections with muscles in the body. […] Professor Dame Pamela Shaw, Professor of Neurology and Director of SITraN at the University of Sheffield, said: I have conducted more than 25 MND clinical trials and the tofersen trial is the first trial in which patients have reported an improvement in their motor function.

• #19 A turning point for the treatment of motor neurone disease | This is the future | The University of Sheffield

  https://www.sheffield.ac.uk/future/mndtreatment

  Results of the trial, published in the New England Journal of Medicine, show that tofersen successfully hits the therapeutic target, and may reduce the loss of motor neurones, which may allow them to start regenerating connections with muscles in the body. […] Professor Dame Pamela Shaw, Professor of Neurology and Director of SITraN, the NIHR Sheffield BRC and the Neuroscience Institute said: I have conducted more than 25 MND clinical trials and the tofersen trial is the first trial in which patients have reported an improvement in their motor function. […] While the drug is not viewed as a cure, clinicians and scientists hope that the landmark trial is a first step toward a licensed therapy for patients with MND. […] This Phase 3 trial would not have been possible without the groundwork of Professor Mimoun Azzouz, one of the leading experts in the development of gene therapy, to modify genes to treat disease.

• #20 New treatment for rare motor neurone disease recommended for approval | European Medicines Agency (EMA)

  https://www.ema.europa.eu/en/news/new-treatment-rare-motor-neurone-disease-recommended-approval

  In patients with amyotrophic lateral sclerosis (ALS) the nerve cells in the brain and spinal cord that control voluntary movement gradually deteriorate, causing increasing loss of muscle function and paralysis of voluntary muscles, including respiratory muscle, which ultimately leads to respiratory failure. […] Currently, there is only one treatment for ALS (riluzole) authorised in the EU. Patients are offered supportive treatment to relieve the symptoms of the disease, such as physical, occupational or speech therapy and breathing support. There is a large unmet medical need for effective therapies that preserve muscle function and prolong the life of patients with ALS. […] Qalsody is an antisense oligonucleotide that binds to the mRNA of the SOD1 gene to reduce the production of SOD1 protein. By reducing the amount of defective SOD1 protein, this medicine is expected to improve the symptoms of ALS.

• #21 Azthena logo with the word Azthena

  https://www.news-medical.net/news/20241022/New-drug-shows-promise-for-motor-neurone-disease-treatment.aspx

  A pioneering study published in the International Journal of Molecular Sciences by researchers at Durham University has revealed promising results for a new treatment targeting motor neurone disease (MND). […] The novel drug compound, Ellorarxine, developed by Nevrargenics, has demonstrated significant potential in improving neuronal health and nervous system regeneration in MND sufferers. […] While current treatments only address symptoms, Ellorarxine shows promise in tackling the underlying causes of the disease. […] This property is crucial for any effective MND treatment and further underscores the potential of Ellorarxine.

• #22 Breakthrough drug for motor neurone disease shows promise in new study – Durham University

  https://www.durham.ac.uk/news-events/latest-news/2024/10/breakthrough-drug-for-motor-neurone-disease-shows-promise-in-new-study/

  A new drug called Ellorarxine is offering hope to those suffering from motor neurone disease (MND), according to a recent study published in the International Journal of Molecular Sciences. […] Current treatments only address symptoms, but Ellorarxine shows potential to tackle the underlying causes of the disease. […] The study revealed that Ellorarxine demonstrates antioxidant and anti-inflammatory effects, even at very low concentrations. […] It was found to increase the expression of key proteins, promote neurite growth, and improve mitochondrial health all crucial factors in combating MND. […] What sets Ellorarxine apart is its ability to address what researchers call the „3Ns” neuroprotection, neuroplasticity, and neurorepair. This comprehensive approach is rare in potential MND treatments and could be a game-changer in the field.

• #23 Breakthrough drug for motor neurone disease shows promise in new study – Durham University

  https://www.durham.ac.uk/news-events/latest-news/2024/10/breakthrough-drug-for-motor-neurone-disease-shows-promise-in-new-study/

  A new drug called Ellorarxine is offering hope to those suffering from motor neurone disease (MND), according to a recent study published in the International Journal of Molecular Sciences. […] Current treatments only address symptoms, but Ellorarxine shows potential to tackle the underlying causes of the disease. […] The study revealed that Ellorarxine demonstrates antioxidant and anti-inflammatory effects, even at very low concentrations. […] It was found to increase the expression of key proteins, promote neurite growth, and improve mitochondrial health all crucial factors in combating MND. […] What sets Ellorarxine apart is its ability to address what researchers call the „3Ns” neuroprotection, neuroplasticity, and neurorepair. This comprehensive approach is rare in potential MND treatments and could be a game-changer in the field.

• #24 Breakthrough drug for motor neurone disease shows promise in new study – Durham University

  https://www.durham.ac.uk/news-events/latest-news/2024/10/breakthrough-drug-for-motor-neurone-disease-shows-promise-in-new-study/

  The success of this study builds on earlier research conducted at Aberdeen University, which showed that Ellorarxine can cross the blood-brain barrier and concentrate in the spinal cord crucial properties for any effective MND treatment. […] With these promising results, Nevrargenics has received approval from the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) to proceed with human trials. […] This marks a significant step forward in the development of a potentially life-changing treatment for MND sufferers.

• #25 Motor neurone disease (MND) | NHS inform

  https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/motor-neurone-disease-mnd/

  Although theres no cure for MND, there are treatments available to help relieve the symptoms. […] A team of healthcare professionals will work together to help care for you. This multidisciplinary team typically includes: a neurologist and an MND care specialist, a specialist in breathing (respiratory specialist), physiotherapists to advise on mobility aids, occupational therapists to assess the need for adaptations to living environments, speech and language therapist to provide help with communication and swallowing, dieticians to support nutrition. […] Riluzole is the only licensed medication in the UK thats shown a survival benefit for people with MND. Riluzole is thought to slow down the damage to the motor neurone cells by reducing their sensitivity to the nerve transmitter glutamate.

• #26 Motor neurone disease (MND)

  https://www.nhs.uk/conditions/motor-neurone-disease/

  Support you might need may include: physiotherapy and exercises to help with muscle weakness and stiffness; dietary advice to help you maintain weight you may also need equipment and aids to help you when eating and drinking; mobility equipment, such as walking frames and wheelchairs, and home adaptations, such as handrails and stair lifts; help with personal care, such as washing, bathing and dressing; help communicating a speech and language therapist can teach you useful techniques to help with talking and advise about suitable communication aids; talking therapy, such as cognitive behavioural therapy (CBT), to help you cope with emotions and feelings, such as anxiety and depression. […] You should have an appointment with your care team every 2 or 3 months to discuss any changes to your symptoms and needs, and to check how treatment is going.

• #27 Treatments and medication | MND Association

  https://www.mndassociation.org/support-and-information/health-and-social-care-services/treatments-and-medication

  Being informed about treatments and medication, as early as possible, can help you make timely decisions that feel right for you. […] Ask your health and social care team for advice, especially if symptoms begin to develop with MND. […] Tube feeding can help avoid this, and ensure you stay nourished and hydrated. […] Introduction of tube feeding is recommended before significant weight loss occurs. […] If you experience breathing difficulties, there are a number of treatments and therapies to help. […] Assisted ventilation uses a machine to support your breathing. […] Ventilation may extend life, but it cannot slow down the disease itself or reverse symptoms. […] Physiotherapy can help you manage certain symptoms, such as fatigue, cramps and stiffness in muscles and joints. […] Occupational therapy assessment looks at your daily living needs, in terms of quality of life.

• #28 Physiotherapy for Motor Neurone Disease

  https://www.manchesterneurophysio.co.uk/adults/conditions-we-treat/oncology/motor-neurone-disease/physiotherapy-treatment-mnd.php

  Manchester Neuro Physio understand how a diagnosis of motor neurone disease can affect all aspects of the lives of you and your loved ones. Through physiotherapy we aim to keep your work, home and social life as active as possible. […] Physiotherapy for motor neurone disease includes; exercises and stretches, joint care, breathing exercises and chest clearance techniques, pain control, anticipating and minimising secondary complications of motor neurone disease, provision of equipment, walking aids, orthoses and wheelchairs, advice for you and those caring for you on handling techniques and equipment, referral to appropriate health professionals (eg. occupational therapy, speech and language therapy). […] The effects of physiotherapy can be: increased quality of life, increased independence, increased energy levels, reduced pain and muscle spasms, reduced risk of chest infections, reduced stiffness. […] Physio treatment for MND.

• #29 Motor Neurone Disease – The OT Practice

  https://www.theotpractice.co.uk/how-we-help/conditions/motor-neurone-disease

  When a condition such as Motor Neurone Disease (MND) impacts on this independence, our team of highly skilled and experienced neurological occupational therapists are available to help. […] Occupational therapists work with people with Motor Neurone Disease and their families to provide advice, support and guidance during their journey. For some they may require recommendations for a specific item of equipment whilst for other clients we are involved in more substantial home modifications and support as their needs change with the progressing condition. Below are some ways that an occupational therapist can help: […] Providing advice on new techniques to continue to complete everyday activities such as dressing and meal preparation for as long as possible as the condition advances […] Support with sourcing the right equipment to help with difficulties as they arise, such as beds or chairs

• #30 Motor Neurone Disease – The OT Practice

  https://www.theotpractice.co.uk/how-we-help/conditions/motor-neurone-disease

  Making longer term recommendations to ensure the home environment will meet both current and future needs. This includes considering adaptations such as wet rooms or through floor lifts. […] Working with a client and / or their employer to advise on ways to remain at work for as long as possible. This may involve pacing strategies to maximise energy or work place changes to ensure you are positioned correctly […] Helping manage fatigue by identifying priorities for the days energy, whether that be getting the children to bed or maintaining a work role, and then planning how to conserve energy levels for this. […] Ensuring the correct seating and wheelchair are provided to maximise function and independence […] Recommending environmental controls which allow the control of functions in the home such as opening curtains, turning on lights or adjusting music or TV settings to be controlled by the client from their wheelchair, armchair or bed. An occupational therapist will work with a client to identify the most suitable environmental controls for them that will preserve their independence for as long as possible.

• #31 Treatments and medication | MND Association

  https://www.mndassociation.org/support-and-information/health-and-social-care-services/treatments-and-medication

  For assessment of your needs, and guidance on speech therapies, techniques, voice banking and communication aids, ask your GP for a referral to a speech and language therapist who has experience of working with MND. […] Riluzole is the only drug currently licensed for the treatment of MND in the UK and approved for use by the NHS. […] It is not a cure for MND, but clinical trials showed a modest impact on survival for people with MND, where use was suitable. […] Medication may be advised where suitable, to ease symptoms and improve quality of life. […] The Department of Health advises getting a flu jab if you live with a chronic disease, including motor neurone disease (MND).

• #32 Motor neurone disease (MND) | NHS inform

  https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/motor-neurone-disease-mnd/

  There are treatments available that can help relieve many of the symptoms of MND and improve your quality of life. […] Physiotherapy can help muscle cramps. In some cases, a medication called quinine can help treat muscle cramps too. […] Muscle stiffness, also known as spasticity, can be treated using medication like baclofen. This helps to help relax the muscles. […] Medication is available to treat drooling of saliva. One option is a hyoscine hydrobromide skin patch. […] Not everyone with MND will have significant speech problems. […] One common treatment for dysphagia is a feeding tube known as a gastrostomy tube. […] You might benefit from non-invasive mechanical ventilation (NIV) to support your breathing. […] Many people with MND draw up an advance decision (sometimes called an advanced directive). This is where you decide your treatment preferences in advance in case you cant communicate your decisions later because youre too ill. […] You might be given the opportunity to take part in research, including drug trials.

• #33 Motor neurone disease (MND)

  https://www.nhs.uk/conditions/motor-neurone-disease/

  There’s currently no cure for motor neurone disease (MND). But there are treatments that can ease your symptoms and help you have the best quality of life possible. […] The type of treatment you’ll be offered will depend on your symptoms and the type of MND you have. You’ll probably need different treatments over time. […] A team of healthcare professionals will give you the support you need. The team may include a specialist nurse, a brain and nerve specialist (neurologist), a physiotherapist and an occupational therapist. […] Treatments you may have include: medicines to help ease symptoms, such as muscle stiffness or cramps, drooling and breathlessness; a medicine called riluzole if you have amyotrophic lateral sclerosis (ALS), which can help slow down its progression. […] You’ll also be offered treatment and support for the symptoms of MND. Every person’s needs will be different depending on their symptoms.

• #34 Motor neurone disease (MND) | NHS inform

  https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/motor-neurone-disease-mnd/

  There are treatments available that can help relieve many of the symptoms of MND and improve your quality of life. […] Physiotherapy can help muscle cramps. In some cases, a medication called quinine can help treat muscle cramps too. […] Muscle stiffness, also known as spasticity, can be treated using medication like baclofen. This helps to help relax the muscles. […] Medication is available to treat drooling of saliva. One option is a hyoscine hydrobromide skin patch. […] Not everyone with MND will have significant speech problems. […] One common treatment for dysphagia is a feeding tube known as a gastrostomy tube. […] You might benefit from non-invasive mechanical ventilation (NIV) to support your breathing. […] Many people with MND draw up an advance decision (sometimes called an advanced directive). This is where you decide your treatment preferences in advance in case you cant communicate your decisions later because youre too ill. […] You might be given the opportunity to take part in research, including drug trials.

• #35 Motor Neurone Disease (MND): Causes and Treatment | Doctor

  https://patient.info/doctor/motor-neurone-disease-pro

  There is limited evidence of the effectiveness of symptomatic drug treatments. […] NICE recommends muscle cramps: consider quinine as first-line treatment. […] If quinine is not effective, not tolerated or contra-indicated, consider baclofen instead as second-line treatment. […] If baclofen is not effective, not tolerated or contra-indicated, consider tizanidine, dantrolene or gabapentin. […] Respiratory distress and the sensation of choking may respond to opioid medications but this must be balanced against their tendency to cause respiratory suppression; they are very useful to treat this symptom in the palliative phase. […] Depression may respond to the use of antidepressant medications. […] Pain often goes under-recognised and undertreated. […] The antispasmodic agents listed above are usually helpful but non-steroidal anti-inflammatory drugs and opioids, such as oral morphine, subcutaneous diamorphine and fentanyl patches, are also utilised, particularly in the palliative phase.

• #36 Motor neurone disease (MND) | NHS inform

  https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/motor-neurone-disease-mnd/

  There are treatments available that can help relieve many of the symptoms of MND and improve your quality of life. […] Physiotherapy can help muscle cramps. In some cases, a medication called quinine can help treat muscle cramps too. […] Muscle stiffness, also known as spasticity, can be treated using medication like baclofen. This helps to help relax the muscles. […] Medication is available to treat drooling of saliva. One option is a hyoscine hydrobromide skin patch. […] Not everyone with MND will have significant speech problems. […] One common treatment for dysphagia is a feeding tube known as a gastrostomy tube. […] You might benefit from non-invasive mechanical ventilation (NIV) to support your breathing. […] Many people with MND draw up an advance decision (sometimes called an advanced directive). This is where you decide your treatment preferences in advance in case you cant communicate your decisions later because youre too ill. […] You might be given the opportunity to take part in research, including drug trials.

• #37 Understanding Motor Neurone Disease: Types & Management – BuzzRx

  https://www.buzzrx.com/blog/motor-neurone-disease

  The U.S. Food and Drug Administration (FDA) has approved the following medications to treat MNDs. They work by targeting the gene mutations in the genetic forms of MNS and/or slowing the progression of the disease. […] Other medications that healthcare providers may prescribe to people with motor neurone disease include muscle relaxers for muscle stiffness and muscle spasms, botulinum toxin injections for muscle stiffness or drooling, and medications such as glycopyrrolate, amitriptyline, atropine, and scopolamine for excessive saliva. […] Some of the supportive therapies that can benefit people with MNDs include assistive devices to maintain muscle strength, mobility and communication devices to maintain independent functioning, physical and occupational therapy to improve balance, posture, and mobility, and slow muscle wasting, speech and language therapy to improve speech, chewing, and swallowing, and nutritional counseling to develop a balanced diet and maintain a healthy weight. […] Research on motor neurone disease (MND) is focused on identifying the causes of MNDs, including genetic mutations, as well as finding new treatments, and, eventually, ways to prevent and cure these disorders.

• #38 Motor Neurone Disease (MND): Causes and Treatment | Doctor

  https://patient.info/doctor/motor-neurone-disease-pro

  There is limited evidence of the effectiveness of symptomatic drug treatments. […] NICE recommends muscle cramps: consider quinine as first-line treatment. […] If quinine is not effective, not tolerated or contra-indicated, consider baclofen instead as second-line treatment. […] If baclofen is not effective, not tolerated or contra-indicated, consider tizanidine, dantrolene or gabapentin. […] Respiratory distress and the sensation of choking may respond to opioid medications but this must be balanced against their tendency to cause respiratory suppression; they are very useful to treat this symptom in the palliative phase. […] Depression may respond to the use of antidepressant medications. […] Pain often goes under-recognised and undertreated. […] The antispasmodic agents listed above are usually helpful but non-steroidal anti-inflammatory drugs and opioids, such as oral morphine, subcutaneous diamorphine and fentanyl patches, are also utilised, particularly in the palliative phase.

• #39 Diagnosis and management of motor neurone disease

  https://pmc.ncbi.nlm.nih.gov/articles/PMC2270983/

  Motor neurone disease is a devastating illness which leads to progressive paralysis and eventual death. […] We will discuss the presentation of motor neurone disease in primary care and update non-specialists on progress with regards to life prolonging interventions, better control of disease symptoms, and an increased understanding of disease mechanisms. […] Riluzole is the only drug identified to have a beneficial effect on survival, following a double blind, randomised placebo controlled trial in patients with the common amyotrophic lateral sclerosis variant of motor neurone disease. […] The greatest advance in recent years in treating motor neurone disease has been the discovery of the beneficial effects of non-invasive ventilation, in which the patient uses a mask ventilator system (usually bilateral positive airway pressure) overnight during sleep.

• #40 Diagnosis and management of motor neurone disease

  https://pmc.ncbi.nlm.nih.gov/articles/PMC2270983/

  Non-invasive ventilation has been shown to prolong life and improve quality of life. […] There is now a wealth of experience in managing the multiple symptoms experienced by patients with motor neurone disease. […] Current practice is to offer the option of enteral feeding to patients either through percutaneous endoscopic gastrostomy, percutaneous radiological insertion of gastrostomy, or nasogastric tube when more than 10% of their premorbid weight has been lost or body mass index falls to below 18.5. […] Multidisciplinary motor neurone disease clinics improve care, reduce the frequency and length of inpatient stays, and improve survival. […] Motor neurone disease remains a devastating illness, and although no breakthrough has been made in terms of a cure, we can offer patients various interventions to enable longer survival with maintenance of independence and a good quality of life.

• #41 Supportive & palliative interventions in motor neurone disease: what we know from current literature? – Benjamin Cheng – Annals of Palliative Medicine

  https://apm.amegroups.org/article/view/17160/html

  MDC is reported to prolong survival from 7 to 24 months, possibly further enhanced in patients with bulbar disease, while reducing the risk of death by 45% at 5 years. […] Both AAN and EFNS recommend MDC care setting for patients with MND, with the current EFNS guidelines recognizing the benefit of MDC approach in improving survival, reducing medical complications, and improving the QOL of patients and their caregivers. […] The advent of NIV has provided clear benefit in terms of improving symptoms, QOL and prolonging survival by up to 7 months, making NIV a central armamentarium of respiratory management in MND patients. […] Some studies suggest that an early introduction of NIV may increase survival, reduce respiratory-related energy expenditure and improve adherence to therapy and QOL.

• #42 Diagnosis and management of motor neurone disease

  https://pmc.ncbi.nlm.nih.gov/articles/PMC2270983/

  Non-invasive ventilation has been shown to prolong life and improve quality of life. […] There is now a wealth of experience in managing the multiple symptoms experienced by patients with motor neurone disease. […] Current practice is to offer the option of enteral feeding to patients either through percutaneous endoscopic gastrostomy, percutaneous radiological insertion of gastrostomy, or nasogastric tube when more than 10% of their premorbid weight has been lost or body mass index falls to below 18.5. […] Multidisciplinary motor neurone disease clinics improve care, reduce the frequency and length of inpatient stays, and improve survival. […] Motor neurone disease remains a devastating illness, and although no breakthrough has been made in terms of a cure, we can offer patients various interventions to enable longer survival with maintenance of independence and a good quality of life.

• #43 Motor neurone disease (MND) | NHS inform

  https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/motor-neurone-disease-mnd/

  There are treatments available that can help relieve many of the symptoms of MND and improve your quality of life. […] Physiotherapy can help muscle cramps. In some cases, a medication called quinine can help treat muscle cramps too. […] Muscle stiffness, also known as spasticity, can be treated using medication like baclofen. This helps to help relax the muscles. […] Medication is available to treat drooling of saliva. One option is a hyoscine hydrobromide skin patch. […] Not everyone with MND will have significant speech problems. […] One common treatment for dysphagia is a feeding tube known as a gastrostomy tube. […] You might benefit from non-invasive mechanical ventilation (NIV) to support your breathing. […] Many people with MND draw up an advance decision (sometimes called an advanced directive). This is where you decide your treatment preferences in advance in case you cant communicate your decisions later because youre too ill. […] You might be given the opportunity to take part in research, including drug trials.

• #44 Diagnosis and management of motor neurone disease

  https://pmc.ncbi.nlm.nih.gov/articles/PMC2270983/

  Non-invasive ventilation has been shown to prolong life and improve quality of life. […] There is now a wealth of experience in managing the multiple symptoms experienced by patients with motor neurone disease. […] Current practice is to offer the option of enteral feeding to patients either through percutaneous endoscopic gastrostomy, percutaneous radiological insertion of gastrostomy, or nasogastric tube when more than 10% of their premorbid weight has been lost or body mass index falls to below 18.5. […] Multidisciplinary motor neurone disease clinics improve care, reduce the frequency and length of inpatient stays, and improve survival. […] Motor neurone disease remains a devastating illness, and although no breakthrough has been made in terms of a cure, we can offer patients various interventions to enable longer survival with maintenance of independence and a good quality of life.

• #45 Supportive & palliative interventions in motor neurone disease: what we know from current literature? – Benjamin Cheng – Annals of Palliative Medicine

  https://apm.amegroups.org/article/view/17160/html

  Weight loss is associated with a more rapid disease progression and is a negative survival factor. […] The option for enteral feeding should be discussed early in the course of the disease and considered when 10% or more of baseline weight has been lost. […] Currently, there is no comparative data regarding differences in median survival or patient tolerance between different feeding mode, and the choice is often guided by clinical practice and experience. […] The experience at the end of life can have a significant impact on patients and their families. […] Owing to the complexities of the management of advance amyotrophic sclerosis (ALS), guidelines recommend that PC teams should be involved early and throughout the disease. […] Understanding the specific detail of how best to deliver the interventions described in this review, such as MDC, NIV and nutritional support, is essential to ensure patients derive the benefits.

• #46 Motor neurone disease (MND) | Better Health Channel

  https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/motor-neurone-disease

  Motor neurone disease (MND) is still incurable, but not untreatable many symptoms can be managed. […] MND is still incurable, but it is not untreatable, as many symptoms can be managed. The drug riluzole available on the Pharmaceutical Benefits Scheme has been demonstrated in clinical trials to prolong survival by several months and may help people to remain in the milder phase of the disease for longer. Research has shown that people live better and longer under the care of a multidisciplinary team. Interventions such as assistance with nutritional intake and breathing improve quality of life. Costly and unproven therapies are sometimes recommended by well-meaning people. Seek professional advice before trying unproven therapies.

• #47 Diagnosis and management of motor neurone disease

  https://pmc.ncbi.nlm.nih.gov/articles/PMC2270983/

  Non-invasive ventilation has been shown to prolong life and improve quality of life. […] There is now a wealth of experience in managing the multiple symptoms experienced by patients with motor neurone disease. […] Current practice is to offer the option of enteral feeding to patients either through percutaneous endoscopic gastrostomy, percutaneous radiological insertion of gastrostomy, or nasogastric tube when more than 10% of their premorbid weight has been lost or body mass index falls to below 18.5. […] Multidisciplinary motor neurone disease clinics improve care, reduce the frequency and length of inpatient stays, and improve survival. […] Motor neurone disease remains a devastating illness, and although no breakthrough has been made in terms of a cure, we can offer patients various interventions to enable longer survival with maintenance of independence and a good quality of life.

• #48 Motor neurone disease (MND)

  https://www.nhs.uk/conditions/motor-neurone-disease/

  Support you might need may include: physiotherapy and exercises to help with muscle weakness and stiffness; dietary advice to help you maintain weight you may also need equipment and aids to help you when eating and drinking; mobility equipment, such as walking frames and wheelchairs, and home adaptations, such as handrails and stair lifts; help with personal care, such as washing, bathing and dressing; help communicating a speech and language therapist can teach you useful techniques to help with talking and advise about suitable communication aids; talking therapy, such as cognitive behavioural therapy (CBT), to help you cope with emotions and feelings, such as anxiety and depression. […] You should have an appointment with your care team every 2 or 3 months to discuss any changes to your symptoms and needs, and to check how treatment is going.

• #49 Supportive & palliative interventions in motor neurone disease: what we know from current literature? – Benjamin Cheng – Annals of Palliative Medicine

  https://apm.amegroups.org/article/view/17160/html

  Although there is no cure for motor neurone disease (MND), the advent of supportive interventions including multidisciplinary care (MDC) has improved treatment interventions and enhanced quality of life (QOL) for MND patients and their carers. […] Our integrative review showed evidence-based MDC, respiratory management and disease-modifying therapy that have improved the outcomes of patients diagnosed with MND. […] Supportive approaches to nutritional maintenance and optimization of symptomatic treatments, including management of communication and neuropsychiatric issues, improve the QOL for MND patients. […] Notwithstanding improvement to care and QOL, survival benefit has become evident with the advent of a MDC framework, early treatment with non-invasive ventilation (NIV). […] MDC approach is the mainstay for the management of patients with chronic neurological conditions such as multiple sclerosis, stroke, acquired brain injury, and MND.

• #50

  https://www.mndqld.org.au/page/74/treatment-and-care

  A social worker, psychologist, or accredited counsellor provides counselling on the psychological and emotional aspects of MND. In addition, a social worker offers advice on legal and accommodation services, and financial supplements available in the local community, or through Federal, state, territory or local government programs. […] Palliative care specialists can help with emotional support and advance care planning. They can also advise about medications to manage breathing difficulties and pain.

• #51 Supportive & palliative interventions in motor neurone disease: what we know from current literature? – Benjamin Cheng – Annals of Palliative Medicine

  https://apm.amegroups.org/article/view/17160/html

  Weight loss is associated with a more rapid disease progression and is a negative survival factor. […] The option for enteral feeding should be discussed early in the course of the disease and considered when 10% or more of baseline weight has been lost. […] Currently, there is no comparative data regarding differences in median survival or patient tolerance between different feeding mode, and the choice is often guided by clinical practice and experience. […] The experience at the end of life can have a significant impact on patients and their families. […] Owing to the complexities of the management of advance amyotrophic sclerosis (ALS), guidelines recommend that PC teams should be involved early and throughout the disease. […] Understanding the specific detail of how best to deliver the interventions described in this review, such as MDC, NIV and nutritional support, is essential to ensure patients derive the benefits.

• #52 Unveiling Hope: Regenerative Medicine's Promising Role In Motor Neuron Disease (MND) Treatment | TheHealthSite.com

  https://www.thehealthsite.com/diseases-conditions/unveiling-hope-regenerative-medicines-promising-role-in-motor-neuron-disease-mnd-treatment-1055829/

  Another groundbreaking approach involves gene therapy, where scientists work to correct or replace faulty genes associated with MND. By addressing the genetic underpinnings of the disease, gene therapy aims to halt or slow down the progression of MND. This avenue holds immense promise for individuals with familial forms of MND, where a genetic mutation is a known contributing factor. […] The quest for a cure for Motor Neuron Disease has entered a new era, fueled by the potential of regenerative medicine as a beacon of hope, offering a glimmer of possibility for individuals facing the daunting challenges of MND.

• #53 Unveiling Hope: Regenerative Medicine's Promising Role In Motor Neuron Disease (MND) Treatment | TheHealthSite.com

  https://www.thehealthsite.com/diseases-conditions/unveiling-hope-regenerative-medicines-promising-role-in-motor-neuron-disease-mnd-treatment-1055829/

  Motor Neuron Disease (MND), a progressive and debilitating neurodegenerative disorder, continues to cast a long shadow over the lives of those affected. […] However, amidst the challenges posed by MND, a ray of hope is emerging through the groundbreaking advancements in regenerative medicine. […] „Regenerative medicine, a rapidly evolving field that harnesses the body’s healing mechanisms, offers novel approaches to treating MND. Unlike traditional treatments that aim to manage symptoms and cells, providing new hope for those battling this relentless disease.” […] One of the promising avenues within regenerative medicine is stem cell therapy, which can replace damaged motor neurons and promote tissue regeneration. Researchers are exploring the transplantation of stem cells into affected areas to replenish lost neurons and restore motor function. Early clinical trials have shown encouraging results, providing a glimmer of optimism for patients and their families.

• #54 Motor neurone disease: how could stem cells help? | Eurostemcell

  https://www.eurostemcell.org/motor-neurone-disease-how-could-stem-cells-help

  The first and only available treatment licensed for use on the NHS that has been shown to alter the progression in some people with MND is the drug riluzole. […] Scientists and clinicians are actively searching for more effective treatments. […] It is likely therefore, that a combination of treatments will be needed to halt or slow disease progression. […] Researchers are now using human stem cells to make models of MND in a dish, aiming to discover more about the cellular and molecular mechanisms that underlie MND. […] The possibility of using stem cell-derived neurons as a cell-replacement therapy to treat MND remains a huge conceptual, technical and ethical challenge. […] An alternative potential use for human stem cells in MND might be to transplant cells that can support the survival and function of remaining motor neurons and/or modify the environment to which they are exposed.

• #55 Latest Research News | MND Association

  https://www.mndassociation.org/research/latest-news

  Researchers from the University of Strasbourg have uncovered a possible new target for future potential treatments. […] This suggests that increasing the activity of the CREB3 protein may be a good target for developing new potential treatments for MND. […] Further research is needed to uncover more about how NfL activates microglia and to investigate whether NfL may be a good target for the development of new potential treatments. […] These results pave the way for a larger clinical trial to test IFB-088 in more people with MND. […] This research is promising, early stage research but further testing is now needed to determine which fatty acids should be focused on, in what amounts they could be effective and how they can be delivered to the neurons. […] The findings are promising and demonstrate the need for a larger, placebo controlled trial to test whether Trimetazidine could slow down the progression of the disease.

• #56 Harnessing the power of plants – MND Research Blog

  https://mndresearch.blog/2023/08/17/harnessing-the-power-of-plants/

  Plant-derived bioactive compounds, which are a type of chemical found in plants and certain foods that may have actions on the body that promote good health, have been widely investigated due to their anti-inflammatory and antioxidant properties, as well as other effects associated with protein expression, waste removal, cell death and inhibiting the toxic build-up of proteins, which makes them potential compounds to develop into new treatments for MND. […] Studies using cell models of MND have found that resveratrol reduced neurodegeneration and protected motor neurons from stress through SIRT-1 activation. […] Studies in SOD1 mouse and rat models of MND had similar results concerning activation of SIRT-1 and reduction in MND severity. […] In models of MND a derivative of curcumin, known as Compound C, successfully protected motor neurons from toxic build-up of TDP-43, which can lead to cell death, and reduced oxidative stress.

• #57 Harnessing the power of plants – MND Research Blog

  https://mndresearch.blog/2023/08/17/harnessing-the-power-of-plants/

  In a clinical trial, curcumin was associated with better ALSFRS-R scores and with improved cellular energy production. […] Plant extracts containing coumarins have been studied in different models of neurodegeneration, including MND, and have been shown to have neuroprotective effects. […] There have been several studies that have demonstrated potential neuroprotective effects of terpenes such as a decrease in programmed cell death (apoptosis), reduction in products of oxidative stress and stabilisation of mitochondria. […] Because of the broad spectrum of action of terpenes, they could be good candidates as treatments for neuroinflammation, oxidative stress and glutamate excitotoxicity but further studies in animal models are needed before any potential treatments can be trialled in people with MND.

• #58

  https://www.kcl.ac.uk/news/treatment-motor-neurone-disease-shows-promise

  A trial investigating a new treatment for amyotrophic lateral sclerosis (ALS) has shared promising results. […] The Modifying Immune Response Outcomes in Amyotrophic Lateral Sclerosis (MIROCALS) research trial aims to find a new treatment for ALS and stop the damage caused by the condition by testing interleukin-2 (IL-2), a molecule that helps to regulate the immune system. […] The main findings from the MIROCALS trial showed that about 80% of people with ALS who were treated with IL-2 had improved chances of survival, with a decrease in the risk of death of over 40%. […] This is an important advance because it offers the opportunity of an additional therapy that appears to have a bigger effect than existing treatments when given to the right group of ALS patients. […] These absolutely remarkable results represent a real breakthrough in ALS research, and could lead to big changes in treatment options for patients living with this devastating disease. […] The findings also provide valuable insights on how the power of the immune system can be harnessed to tackle MND, helping shed light on other potential treatment strategies.

• #59 Motor neuron disease: UK DRI is unlocking transformative

  https://www.ukdri.ac.uk/news-and-events/motor-neuron-disease-uk-dri-unlocking-transformative-treatments

  The UK DRI has 11 dedicated MND/ALS research programmes, focused on uncovering the biological mechanisms, developing novel diagnostic tools, identifying targets for new drugs, and accelerating clinical trials, already making significant progress. […] One drug, tofersen, has been licensed in the US for people with MND/ALS who have mutations in a gene called SOD1, which is around 2% of those affected by the condition. […] This particular gene therapy for this rare form of MND isn’t a cure, but it shows that if you understand a disease mechanism, and design a drug well, disease can be slowed. And that is transformative because it proves it is possible to alter the disease course of MND. […] MND-SMART (Systematic Multi-arm Adaptive Randomised Trial) is an innovative type of trial which evaluates multiple treatments simultaneously in a multi-arm, multi-stage adaptive platform.

• #60 Motor neuron disease: UK DRI is unlocking transformative

  https://www.ukdri.ac.uk/news-and-events/motor-neuron-disease-uk-dri-unlocking-transformative-treatments

  MND-SMART has democratised access to MND clinical trials in the UK. […] To accelerate progress in MND/ALS research, the UK DRI MND research community have recognised that creating strong links between discovery and clinical research is key. […] Supported by the UK DRI’s gene therapy platform, Prof Shaw co-founded the UK DRI spinout company AviadoBio in 2021, focused on developing gene therapies for MND/ALS and frontotemporal dementia. […] The goal is to get something for the patients. We need information, we need to find a cure.

• #61 Motor neurone disease (MND) | NHS inform

  https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/motor-neurone-disease-mnd/

  There are treatments available that can help relieve many of the symptoms of MND and improve your quality of life. […] Physiotherapy can help muscle cramps. In some cases, a medication called quinine can help treat muscle cramps too. […] Muscle stiffness, also known as spasticity, can be treated using medication like baclofen. This helps to help relax the muscles. […] Medication is available to treat drooling of saliva. One option is a hyoscine hydrobromide skin patch. […] Not everyone with MND will have significant speech problems. […] One common treatment for dysphagia is a feeding tube known as a gastrostomy tube. […] You might benefit from non-invasive mechanical ventilation (NIV) to support your breathing. […] Many people with MND draw up an advance decision (sometimes called an advanced directive). This is where you decide your treatment preferences in advance in case you cant communicate your decisions later because youre too ill. […] You might be given the opportunity to take part in research, including drug trials.

• #62 Motor Neurone Disease (MND): Types, Symptoms, Causes & Prevention

  https://www.maxhealthcare.in/blogs/motor-neurone-disease-mnd-symptoms-and-causes

  Palliative care specialists can provide comprehensive care to enhance the quality of life, manage symptoms, and offer emotional support throughout the course of the disease. […] Individuals with MND may have the option to participate in clinical trials of experimental treatments. These trials aim to develop new therapies and gain a better understanding of the disease.

• #63

  https://www.singhealth.com.sg/patient-care/conditions-treatments/motor-neuron-disease

  Counselling and support: feelings of hopelessness and depression are relatively common due to the lack of a cure and severe disability MND causes. Counselling and strong social support can help people with MND and their family members come to terms with the diagnosis, find positive meaning in life and find ways to cope with the condition. […] Advance care planning: MND is a life-limiting condition and communication challenges are common because it affects speech. Advance care planning in the early stages of the disease helps ensure the persons goals, values and care wishes are respected throughout their illness and when they pass on.

• #64 Talk therapy can improve quality of life for people with MND | UCL News – UCL – University College London

  https://www.ucl.ac.uk/news/2024/may/talk-therapy-can-improve-quality-life-people-mnd

  Psychological therapy can significantly improve quality of life for people living with motor neuron disease (MND) when delivered alongside usual care, finds a study led by UCL and University of Sheffield researchers. […] This study provides strong evidence that Acceptance and Commitment Therapy can be a valuable tool for improving quality of life for the 5,000 people who are currently living with MND in the UK. […] The results were positive, with ACT plus usual care shown to be effective at maintaining or improving quality of life in patients with MND at six and nine months post-randomisation compared to usual care alone. […] The COMMEND study shows psychological support can be effective in improving quality of life and that there is clear clinical benefit in Acceptance Commitment Therapy specifically. It is therefore important these findings are taken forward and consideration is given to offering psychological support, such as ACT, within the standard care package to all those who may benefit from it.

• #65 Acceptance and Commitment Therapy for people living with motor neuron disease: an uncontrolled feasibility study | Pilot and Feasibility Studies | Full Text

  https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-023-01354-7

  The feasibility findings highlight that a fully powered randomised controlled trial (RCT) of ACT for improving psychological health in plwMND is justified. […] ACT may be particularly suitable for people with life-limiting illnesses and disabling long-term conditions such as MND. […] Consequently, the primary aim of this uncontrolled study was to examine the feasibility and acceptability of ACT for improving the psychological health of plwMND. […] This study showed that it is feasible to recruit plwMND to an uncontrolled study of ACT for improving psychological health and this type of intervention is acceptable to this population. […] There was good evidence of the acceptability and feasibility of ACT for plwMND, in addition to possible signals of efficacy, particularly with respect to anxiety and psychological quality of life. […] Consequently, a fully powered RCT evaluating the clinical and cost-effectiveness of ACT adapted specifically for plwMND is currently underway.

• #66 Diagnosis and management of motor neurone disease

  https://pmc.ncbi.nlm.nih.gov/articles/PMC2270983/

  Non-invasive ventilation has been shown to prolong life and improve quality of life. […] There is now a wealth of experience in managing the multiple symptoms experienced by patients with motor neurone disease. […] Current practice is to offer the option of enteral feeding to patients either through percutaneous endoscopic gastrostomy, percutaneous radiological insertion of gastrostomy, or nasogastric tube when more than 10% of their premorbid weight has been lost or body mass index falls to below 18.5. […] Multidisciplinary motor neurone disease clinics improve care, reduce the frequency and length of inpatient stays, and improve survival. […] Motor neurone disease remains a devastating illness, and although no breakthrough has been made in terms of a cure, we can offer patients various interventions to enable longer survival with maintenance of independence and a good quality of life.

• #67 Treatment approaches in motor neurone disease – PubMed

  https://pubmed.ncbi.nlm.nih.gov/27454577/

  Although there is no cure for motor neurone disease (MND), the advent of multidisciplinary care and neuroprotective agents has improved treatment interventions and enhanced quality of life for MND patients and their carers. […] Evidence-based multidisciplinary care, respiratory management and disease-modifying therapy have improved the outcomes of patients diagnosed with MND. Supportive approaches to nutritional maintenance and optimization of symptomatic treatments, including management of communication and neuropsychiatric issues, improve the quality of life for MND patients. […] Notwithstanding improvement to care and quality of life, survival benefit has become evident with the advent of a multidisciplinary care framework, early treatment with riluzole and noninvasive ventilation. […] Effective symptom control through palliative care is achievable and essential. […] Encouragingly, current progress of clinical trials continues to close the gap towards the successful development of curative treatment in MND.

• #68 Supportive & palliative interventions in motor neurone disease: what we know from current literature? – Benjamin Cheng – Annals of Palliative Medicine

  https://apm.amegroups.org/article/view/17160/html

  Although there is no cure for motor neurone disease (MND), the advent of supportive interventions including multidisciplinary care (MDC) has improved treatment interventions and enhanced quality of life (QOL) for MND patients and their carers. […] Our integrative review showed evidence-based MDC, respiratory management and disease-modifying therapy that have improved the outcomes of patients diagnosed with MND. […] Supportive approaches to nutritional maintenance and optimization of symptomatic treatments, including management of communication and neuropsychiatric issues, improve the QOL for MND patients. […] Notwithstanding improvement to care and QOL, survival benefit has become evident with the advent of a MDC framework, early treatment with non-invasive ventilation (NIV). […] MDC approach is the mainstay for the management of patients with chronic neurological conditions such as multiple sclerosis, stroke, acquired brain injury, and MND.

• #69 Motor Neurone Disease Breakthroughs | Open Medscience

  https://openmedscience.com/motor-neurone-disease-diagnosis-and-future-research-insights/

  Several clinical trials are underway to test new treatments and interventions for MND. […] Immunotherapy, which has revolutionised cancer treatment, is being investigated as a potential treatment for MND. […] Despite the progress being made in MND research, several challenges and limitations remain. […] The future of MND research is promising, with several avenues of investigation offering hope for new treatments and, eventually, a cure. […] Ultimately, continued research and collaboration across disciplines will be essential to unlock new insights into MND and improve the lives of those affected by this relentless disease.

• #70 Motor neuron disease: UK DRI is unlocking transformative

  https://www.ukdri.ac.uk/news-and-events/motor-neuron-disease-uk-dri-unlocking-transformative-treatments

  MND-SMART has democratised access to MND clinical trials in the UK. […] To accelerate progress in MND/ALS research, the UK DRI MND research community have recognised that creating strong links between discovery and clinical research is key. […] Supported by the UK DRI’s gene therapy platform, Prof Shaw co-founded the UK DRI spinout company AviadoBio in 2021, focused on developing gene therapies for MND/ALS and frontotemporal dementia. […] The goal is to get something for the patients. We need information, we need to find a cure.

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