Neuromyotonia (NMT) is a form of peripheral nerve hyperexcitability that causes spontaneous muscular activity resulting from repetitive motor unit action potentials of peripheral origin. NMT along with Morvan's syndrome are the most severe types in the Peripheral Nerve Hyperexciteability spectrum. Example of two more common and less severe syndromes in the spectrum are cramp fasciculation syndrome and benign fasciculation syndrome. NMT can have both hereditary and acquired (non-inherited) forms. The prevalence of NMT is unknown.
Frontotemporal dementia (FTD), also called frontotemporal degeneration disease or frontotemporal neurocognitive disorder, encompasses several types of dementia involving the progressive degeneration of the brain's frontal and temporal lobes. Men and women appear to be equally affected. FTD generally presents as a behavioral or language disorder with gradual onset. Signs and symptoms tend to appear in late adulthood, typically between the ages of 45 and 65, although it can affect people younger or older than this. Currently, no cure or approved symptomatic treatment for FTD exists, although some off-label drugs and behavioral methods are prescribed.
A fasciculation, or muscle twitch, is a spontaneous, involuntary muscle contraction and relaxation, involving fine muscle fibers. They are common, with as many as 70% of people experiencing them. They can be benign, or associated with more serious conditions. When no cause or pathology is identified, they are diagnosed as benign fasciculation syndrome.
Primary lateral sclerosis (PLS) is a very rare neuromuscular disease characterized by progressive muscle weakness in the voluntary muscles. PLS belongs to a group of disorders known as motor neuron diseases. Motor neuron diseases develop when the nerve cells that control voluntary muscle movement degenerate and die, causing weakness in the muscles they control.
Pseudobulbar affect (PBA), or emotional incontinence, is a type of neurological disorder characterized by uncontrollable episodes of crying or laughing. PBA occurs secondary to a neurologic disorder or brain injury. Patients may find themselves crying uncontrollably at something that is only slightly sad, being unable to stop themselves for several minutes. Episodes may also be mood-incongruent: a patient may laugh uncontrollably when angry or frustrated, for example. Sometimes, the episodes may switch between emotional states, resulting in the patient crying uncontrollably before dissolving into fits of laughter.
Progressive muscular atrophy (PMA), also called Duchenne–Aran disease and Duchenne–Aran muscular atrophy, is a disorder characterised by the degeneration of lower motor neurons, resulting in generalised, progressive loss of muscle function.
Progressive bulbar palsy (PBP) is a medical condition. It belongs to a group of disorders known as motor neuron diseases. PBP is a disease that attacks the nerves supplying the bulbar muscles. These disorders are characterized by the degeneration of motor neurons in the cerebral cortex, spinal cord, brain stem, and pyramidal tracts. This specifically involves the glossopharyngeal nerve (IX), vagus nerve (X), and hypoglossal nerve (XII).
Orla Hardiman (BSc MB BCh BAO MD FRCPI FAAN FTCD MRIA is an Irish consultant neurologist. She was appointed Professor of Neurology by Trinity College University of Dublin in 2014, where she heads the Academic Unit of Neurology, housed in Trinity Biomedical Sciences Institute. She leads a team of over 40 researchers focusing on clinical and translational aspects of amyotrophic lateral sclerosis and related neurodegenerations. She was the Health Service Executive National Clinical Lead for Neurology between 2019 and 2024. Hardiman has become a prominent advocate for neurological patients in Ireland, and for patients within the Irish health system generally. She was a co-founder of the Neurological Alliance of Ireland, an umbrella organisation for over 24 advocacy groups in Ireland.
Brainhell was the pen name of Brian Hill, an American journalist and poet who blogged closely and anonymously for four years about amyotrophic lateral sclerosis (ALS), the disease that eventually killed him. Hill never identified himself by his real name, and pictures he posted to the blog did not show his face; after his death, however, a full facial photo was posted on the front page of the blog.
Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) or Lou Gehrig's disease (LGD), is a rare, terminal neurodegenerative disorder that results in the progressive loss of both upper and lower motor neurons that normally control voluntary muscle contraction. ALS is the most common form of the motor neuron diseases. ALS often presents in its early stages with gradual muscle stiffness, twitches, weakness, and wasting. Motor neuron loss typically continues until the abilities to eat, speak, move, and, lastly, breathe are all lost. While only 15% of people with ALS also fully develop frontotemporal dementia, an estimated 50% face at least some minor difficulties with thinking and behavior. Depending on which of the aforementioned symptoms develops first, ALS is classified as limb-onset or bulbar-onset.
Ben Byer was an American stage actor and playwright. His experiences after being diagnosed with Amyotrophic lateral sclerosis (ALS) are documented in the 2007 film Indestructible.
Sean Forrester Scott was a self-educated disease activist and researcher, filmmaker, innovator, entrepreneur and until the time of his death, the president of the ALS Therapy Development Institute, the world's largest amyotrophic lateral sclerosis research center. Scott himself was diagnosed with ALS in 2008 at the age of 38.
The ALS Society of Canada is a Canadian voluntary health organization dedicated to the fight against amyotrophic lateral sclerosis (ALS) and to providing support for those living with ALS.
ALS Awareness Month is a campaign to spread awareness of and raise funds for research for a cure for ALS.
Gloria Taylor was a Canadian who was an advocate of medically-assisted dying and suffered from Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. Taylor began to experience the early symptoms of ALS in 2003. A neurologist diagnosed her disease in 2009.
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that typically affects adults around 54–67 years of age, although anyone can be diagnosed with the disease. People diagnosed with ALS live on average 2–4 years after diagnosis due to the quick progression of the disease. The progression and severity of ALS is rated by doctors on the ALS Functional Rating Scale, which has been revised and is referred to as ALSFRS-R.
Research on amyotrophic lateral sclerosis (ALS) has focused on animal models of the disease, its mechanisms, ways to diagnose and track it, and treatments.
Merit Cudkowicz is an American neurologist and neuroscientist who studies amyotrophic lateral sclerosis (ALS). Cudkowicz is Julieanne Dorn Professor of Neurology at Harvard Medical School, director of the ALS clinic and the Neurological Clinical Research Institute at Massachusetts General Hospital (MGH), and chair of the Department of Neurology at MGH. Cudkowicz has led several large-scale collaborations and clinical trials to test novel treatments for ALS and as of 2020, researching ways to detect early biomarkers of ALS to improve diagnosis.
Hope Loves Company is an American 501(c)(3) non-profit organization founded in 2007 that focuses upon providing resources and emotional support to the children and grandchildren of amyotrophic lateral sclerosis (ALS) patients. It is the sole non-profit in the United States with the purpose of providing support and resources to families affected by amyotrophic lateral sclerosis. The organization operates primarily by providing care packages and a free overnight retreat entitled Camp HLC.
Brian Wallach is an American businessman, lawyer, and amyotrophic lateral sclerosis (ALS) research and patient advocate. He became known for his activism after being diagnosed with ALS in 2017. Since then, Wallach has founded a nonprofit, I AM ALS, and a telemedicine company, Synapticure.
