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.
Muscular Dystrophy Canada (MDC) is a non-profit organization seeking a cure for neuromuscular disorders. Founded in 1954 as Muscular Dystrophy Association of Canada, volunteers and staff nationwide have helped to provide support and resources to those affected. Since the founding year, over $64 million has been put towards research via collaborations, fundraising events, and donations.
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.
James Heywood is an American MIT mechanical engineer who founded with his family the ALS Therapy Development Institute when his younger brother Stephen Heywood was diagnosed with amyotrophic lateral sclerosis (ALS) in December 1998. He is currently a director at AOBiome, as well as founder and CEO of PatientsLikeMe.
Jo-Anna Downey was a Canadian stand-up comedian.
Eva Lucille Feldman is an American physician-scientist who is a leading authority on neurodegenerative disease. She serves as the Russell N. DeJong Professor of Neurology at the University of Michigan, as well as Director of the NeuroNetwork for Emerging Therapies and ALS Center of Excellence at Michigan Medicine. She was also named the James W. Albers Distinguished University Professor of Neurology.
The ALS Association is an American nonprofit organization that funds global amyotrophic lateral sclerosis (ALS) research, provides care services and programs to people affected by ALS through its nationwide network of clinical care centers, and works with ALS advocates around the country for state and federal policies that serve people living with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.
Prize4Life is a non-profit organization dedicated to the discovery of treatments and a cure for amyotrophic lateral sclerosis (ALS). The organization uses the inducement prize contest model. It was founded in 2007 by Avi Kremer, an Israeli student at Harvard Business School, who was diagnosed with ALS at the age of 29.
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.
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.
The Brain Research Foundation (BRF) is a non-profit private organization in Chicago, Illinois. The foundation was established in 1953 to promote and support scientific research concerning the brain. The BRF aides scientists in their pursuits to understand, prevent, treat, and cure brain disorders. Brain tumors, multiple sclerosis, Alzheimer's and Parkinson's diseases, epilepsy, amyotrophic lateral sclerosis (ALS), learning disorders, depression and many others are disorders the BRF has helped raise awareness for.
Michael Goldsmith was a law professor at Brigham Young University's J. Reuben Clark Law School.
The Canadian Spinal Research Organization (SCRO) is a nationally registered charity whose mission is to improve the physical quality of life for persons with spinal cord injuries (SCI) and related neurological deficits, as well as to reduce the number of spinal cord injuries through awareness and prevention programs.
ALS Awareness Month is a campaign to spread awareness of and raise funds for research for a cure for ALS.
Helixmith Co. LTD. is a biotechnology company located in Seoul, South Korea with US presence in San Diego. The company has an extensive gene therapy pipeline, including a non-viral plasmid DNA program for neuromuscular and ischemic disease, a CAR-T program targeting several different types of solid tumors, and an AAV vector program targeting neuromuscular diseases. Helixmith’s lead gene is Engensis (VM202), currently in phase III diabetic peripheral neuropathy (DPN) in the US. Engensis (VM202) is a plasmid DNA designed to simultaneously express two isoforms of hepatocyte growth factor (HGF), HGF 728 and HGF 723. In addition to DPN, Engensis is also being studied in diabetic foot ulcers (DFU), amyotrophic lateral sclerosis (ALS), coronary artery disease (CAD), claudication, and Charcot-Marie-Tooth disease (CMT).
Abacavir/dolutegravir/lamivudine, sold under the brand name Triumeq among others, is a fixed-dose combination antiretroviral medication for the treatment of HIV/AIDS. It is a combination of three medications with different and complementary mechanisms of action: abacavir, dolutegravir and lamivudine.
The Les Turner ALS Foundation is a non-profit organization based in Chicago that provides amyotrophic lateral sclerosis (ALS) patient services; supports events, education and awareness about ALS; and funds ALS research. Since it was founded, it has raised over $64 million.
Research on amyotrophic lateral sclerosis (ALS) has focused on animal models of the disease, its mechanisms, ways to diagnose and track it, and treatments.
Bryan J. Traynor is a neurologist and a senior investigator at the National Institute on Aging, and an adjunct professor at Johns Hopkins University. Dr. Traynor studies the genetics of human neurological conditions such as amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). He led the international consortium that identified pathogenic repeat expansions in the C9orf72 gene as a common cause of ALS and FTD. Dr. Traynor also led efforts that identified other Mendelian genes responsible for familial ALS and dementia, including VCP, MATR3, KIF5A, HTT, and SPTLC1.
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.
