Founded | 1977 |
---|---|
Founder | Les Turner |
Type | non-profit |
Purpose | ALS research, awareness, and patient services |
Location | |
Key people | Laura Freveletti, Chief Executive Officer [1] |
Affiliations | International Alliance of ALS/MND Associations |
Website | lesturnerals.org |
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. [2] Since it was founded, it has raised over $64 million. [3]
The Foundation was founded by Les Turner, a Chicago businessman, and his family after he was diagnosed with amyotrophic lateral sclerosis (ALS) in 1976. [4] Les Turner serves nearly 90 percent of ALS patients in the Chicago metropolitan area. [5]
In 1979, the Les Turner ALS Research Laboratory was opened at Northwestern Medicine. Then, in 1986, the Lois Insolia ALS Clinic was opened at Northwestern to provide patient services. It was one of the first multidisciplinary ALS clinics opened in the United States. Currently, in addition to medical care, the clinic offers access to clinical trials and research studies. [4] [6]
In 1983, the Foundation started patient support groups. [7] The groups are now offered online at no cost. [8]
In 1992, Les Turner ALS became a founding member of the International Alliance of ALS/MND Associations. [7]
In 2002, the Foundation's main event, the ALS Walk for Life was started. [7] [9]
In 2014, the Les Turner ALS Center at Northwestern Medicine was created to "accelerate research and advance patient care". The Center was opened in addition to the continual operation of three research laboratories and the Lois Insolia ALS Clinic. [10] Among the Center's contributions to ALS research have been the 1993 co-discovery of the first genetic mutation linked to cause ALS, SOD1, [11] [12] as well as FUS in 2009 [13] [14] and others linked to familial ALS.
In 2015, Les Turner ALS released the campaign, "Freeze ALS", along with 12 ice sculptures around Chicago for ALS Awareness Month. [15] [16]
Antisense therapy is a form of treatment that uses antisense oligonucleotides (ASOs) to target messenger RNA (mRNA). ASOs are capable of altering mRNA expression through a variety of mechanisms, including ribonuclease H mediated decay of the pre-mRNA, direct steric blockage, and exon content modulation through splicing site binding on pre-mRNA. Several ASOs have been approved in the United States, the European Union, and elsewhere.
Jon Blais, also known as Blazeman, was an American triathlete noted for his fight against amyotrophic lateral sclerosis (ALS) and is the namesake of the Blazeman Foundation.
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.
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).
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.
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 chapters, 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. The ALS Association is broken up into distinct chapters, each servicing a particular geographic area of the United States and all working under the umbrella of a national charter and administrator.
Superoxide dismutase [Cu-Zn] also known as superoxide dismutase 1 or hSod1 is an enzyme that in humans is encoded by the SOD1 gene, located on chromosome 21. SOD1 is one of three human superoxide dismutases. It is implicated in apoptosis, familial amyotrophic lateral sclerosis and Parkinson's disease.
Profilin-1 is a protein that in humans is encoded by the PFN1 gene.
Alsin is a protein that in humans is encoded by the ALS2 gene. ALS2 orthologs have been identified in all mammals for which complete genome data are available.
TAR DNA-binding protein 43 is a protein that in humans is encoded by the TARDBP gene.
Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) or Lou Gehrig's disease, is a rare and terminal neurodegenerative disease that results in the progressive loss of motor neurons that control voluntary muscles. ALS is the most common form of the motor neuron diseases. Early symptoms of ALS include stiff muscles, muscle twitches, gradual increasing weakness, and muscle wasting. Limb-onset ALS begins with weakness in the arms or legs, while bulbar-onset ALS begins with difficulty in speaking or swallowing. Around half of people with ALS develop at least mild difficulties with thinking and behavior, and about 15% develop frontotemporal dementia. Motor neuron loss continues until the abilities to eat, speak, move, or, lastly, breathe are lost.
ALS Awareness Month is a campaign to spread awareness of and raise funds for research for a cure for ALS.
C9orf72 is a protein which in humans is encoded by the gene C9orf72.
Project MinE is an independent large scale whole genome research project that was initiated by 2 patients with amyotrophic lateral sclerosis and started on World ALS Day, June 21, 2013.
Christopher Edward Dennistoun Shaw MBChB, MD, FRACP, FRCP (Hon), FMedSci, FANA is Professor of Neurology and Neurogenetics at the Institute of Psychiatry, Psychology and Neuroscience, King's College London. He is also Head of the Department of Basic and Clinical Neuroscience, Director of the Maurice Wohl Clinical Neuroscience Institute at King's College London and an Honorary Consultant Neurologist and Neurogeneticist at King's College Hospital. His major research interest is in the genetic, molecular and cellular basis of motor neuron diseases such as amyotrophic lateral sclerosis (ALS).
There are more than 25 genes known to be associated with amyotrophic lateral sclerosis (ALS) as of June 2018, which collectively account for about 70% of cases of familial ALS (fALS) and 10% of cases of sporadic ALS (sALS). About 5–10% of cases of ALS are directly inherited. Overall, first-degree relatives of an individual with ALS have a 1% risk of developing ALS. ALS has an oligogenic mode of inheritance, meaning that mutations in two or more genes are required to cause disease.
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.
Rosa Rademakers is an American neurogeneticist and professor within the Department of Neuroscience at the Mayo Clinic. Her research centers on the genetic basis of neurodegenerative diseases, such as identifying causal genes and their function, exploring familial risk factors, and the mechanism of the degeneration. Her neurodegenerative diseases of focus include "Alzheimer's disease (AD), frontotemporal dementia (FTD) and amyotrophic lateral sclerosis (ALS)." She received a Bachelor of Arts in Biology, a Master of Arts in Biochemistry, and a Ph.D. in Science, all from the University of Antwerp. Originally from the Netherlands, she came to the Mayo Clinic in 2005 for a post-doctoral fellowship, and in 2007 she was given a lab director position.
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.
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