Scott Haren and Ben Harris met in a support group for people with Lou Gehrig's disease. They speak together: Scott speaks the words of his friend Ben, who types them onto a computer because he no longer can speak.
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Smithsonian gets $3M pledge to develop its 1st exhibit on human genome on ...Washington PostThe Human Genome Project was launched in 1990 to better understand the relationship between genetics, health and disease.
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Ken Hess column: Faster disability approval for people with ALSWausau Daily HeraldAmyotrophic lateral sclerosis, more commonly referred to as Lou Gehrig's disease, is a progressive neurodegenerative disease that attacks nerve cells and pathways in...
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As the number of troops exposed to improvised explosive devices in Iraq and Afghanistan has mounted, so, too, has concern about the long-term impact of these and other blasts on the neurological health of service members. These worries are amplified by recent evidence that head injuries sustained by football players and other athletes can cause personality changes, dementia, and neurodegeneration later in life. A study reported this week in Science Translational Medicine ties these troublesome threads together: In autopsies of four military veterans who served in recent conflicts, researchers have found distinctive features of the same neurodegenerative disease reported previously in athletes.
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Keeping muscles strong and active in a mouse model of amyotrophic lateral sclerosis allows the animals to perform better in the face of dwindling motor neuron input, but ultimately cannot slow their demise, according to new research reported in the May 2 Cell Metabolism. Researchers in the laboratory of Don Cleveland at the University of California, San Diego, overexpressed the mitochondria-boosting gene PGC-1α in the skeletal muscles of mice that systemically produced mutant superoxide dismutase 1 (SOD1). The double transgenic mice could run farther and faster than single-mutant mSOD1 mice, but their disease progressed at the same rate. The work confirms that while mSOD1 in muscles causes atrophy, the muscle woes do not contribute to the neurodegeneration that is the primary ALS pathology, said co-first authors Sandrine Da Cruz and Philippe Parone in an interview with ARF.
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By Julie Steenhuysen CHICAGO (Reuters) - Using just her thoughts, a 58-year-old paralyzed woman instructed a robotic arm to grasp a cup of coffee and guide it to her mouth where she sipped from a straw, the first drink she has been able to serve herself in 15 years. The woman is one of two patients in the ongoing trial of BrainGate neural interface, an experimental brain-computer interface technology that may one day give paralyzed individuals more mobility. '
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Compassionate Allowances: these two words represent more than 100 conditions. These are conditions that the Social Security Administration has stated invariably qualify for disability benefits. Amyotrophic lateral sclerosis, more commonly referred to as Lou Gehrig's disease, is on that list. It is important that those who have this neurodegenerative illness, and their advocates, are aware their Social Security disability insurance claims should receive a faster approval. ALS affects thousands of people in the D.C. metro, Baltimore and Northern Virginia areas. Across the country, about 30,000 people are currently suffering from this affliction, with about 5,600 new diagnoses each year. The nature of the disease generally limits the work capacity of its patients shortly after diagnosis. This affects not only the patients but also their families and loved ones.
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Seven of Ontario's 10,500 full-time firefighters have ALS, much higher than in the general population The problems started for Al Pettit five years ago with a nagging weakness, and a peculiar feeling beneath his skin. “One day I was sitting on the toilet. I looked down, and I noticed my calf was wiggling,” said the former Mississauga firefighter. At the time, he was on a seven-week trip to the Philippines. He attributed the twitching to his tiring travels, and to overindulging in foreign beer. But at home a couple of months later, he still felt weak and his calf was still wiggling. He tinkered with his heart medication, but “then both calves started,” he said. While waiting for doctors to figure out the problem, Mr. Pettit, a 238-pound firefighter who had been having trouble mustering the strength to pick up a ladder, did a little Internet research. Al Pettit suffers from ALS, also known as Lou Gehrig's disease. A retired firefighter, Pettit believes that toxic fumes and gases he encountered while on the job may have contributed to his illness. Here he uses a mask to help him breath while working with physiotherapist Wendy Fowles. Any time he lays down he requires the mask. (Kevin Van Paass/Globe and Mail) “I diagnosed myself with ALS,” he said.
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As April Wine once sagely noted, rock ’n’ roll is a vicious game. Sometimes, however, it’s got nothing on life, this proven by Jason Becker: Not Dead Yet. Straddling the line between profoundly sad and powerfully inspirational, director Jesse Vile’s doc focuses on Jason Becker, a former guitar prodigy from the working-class section of Richmond, California. At age 14 he’d mastered the back catalogues of both Van Halen and Eric Clapton, and, that not being enough, also figured out how to play Mozart’s greatest hits speed-metal style.
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Pete Frates wants people to know that, all things considered, he feels pretty good. Eight weeks removed from being formally diagnosed with ALS, he's attacking the disease with the same contagious, positive energy that made him a leader on the baseball field at St. John's Prep and Boston College.
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Science CodexGlial cells supply nerve fibers with energy-rich metabolic productsScience CodexBetween the axons, there are extensions of astrocytes, another type of glial cells. But how does the energy refuelling work?
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A Watertown man, who was recently diagnosed with an incurable, severely disabling and fatal illness, is reaching out to others who also suffer from Lou Gehrig's disease. (Do you or someone you know have ALS, commonly known as Lou Gehrig's Disease?
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I have worked with the ALS Association for over seven years, and they do a wonderful job of supporting families and caregivers who are doing their best to assist those living with this disease. This year, Ignis Systems is proud ...
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When ALS strikes a family, the emotional, physical, financial and learning challenges can be overwhelming for family members to address. Friends and extended family want to help but are often unable to identify what is needed by the family. In turn, family members are often reluctant to ask for help or are overstressed and unable to articulate the needs. The development of an ALS Care Connection team is a method to help families get the community support that is needed without stretching the abilities of those who volunteer. This plan presents an opportunity for family and friends to share the care in an organized and coordinated manner.
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Recent studies suggest that there are other disorders brought on by concussion-like trauma that can erode the central nervous system in similar ways as ALS.
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The proposed Genetic Information Privacy Act if passed could have negative effect on research. DNA has a map of not only the past and present of person but also of his or her future. A lot of information can be decoded from a genetic record a person. Some call it the “future diary”. Advocates of genetic privacy laws want DNA to be regarded as “personal property” and that anybody trespassing this property can be persecuted.
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ALSuntangled (ALSU) currently has over 45 individuals, doctors and/or clinics slated for investigation. These investigations are conducted by ALSuntangled as to the claims, merits and/or advise being presented to the ALS community. One individual currently on that list is Dr. David Perlmutter, an advocate for “Functional Medicine”. Functional Medicine combines the ancient traditional health beliefs of primitive peoples with the benefits of modern science. It is an emerging field which focuses upon improvement of physical, mental, (spiritual?) and emotional function.
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Pharma giants Pfizer, Eli Lily, and AstraZeneca plan to give more than 20 abandoned drugs to the NIH, who in turn will provide the drugs and over 20 million in funding to academic researchers with viable proposals for repurposing these dugs for new indications. Are any potential ALS drugs hiding among them?
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An editorial in today's Science Translational Medicine about traumatic brain injuries, genetics and the long-term risks for degenerative brain disease caught our eye. According to the authors, the suicide of former star NFL ...
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The ALS Therapy Development Institute and Neurotune established a collaboration to evaluate one of the latter’s neuromuscular diseases candidates in an ALS disease model. ALS is associated with motor neurons and their axons becoming disconnected from muscle, and Neurotune has identified a class of compounds designed to maintain neuromuscular junction strength and stability. Switzerland-based Neurotune is developing a pipeline of drugs that act to modulate connections between nerve cells and their target cells, for the treatment of nervous system disorders including sarcopenia (age-related loss of muscle mass and strength) and chronic pain.
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The ALS Association is proud to announce seven new research grants that will allow scientists to study several of topics pertinent to The Association\'s TREAT ALS Research Portfolio.
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After Diagnosis, Cellucci Aiming To Help Raise Millions For ALS ResearchCBS Local The former Massachusetts governor was diagnosed three years ago with amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's disease.
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What happens when you’re faced with a life-threatening illness but you can’t get into a clinical trial or wait for lengthy drug development to run its course? Some patients take matters into their own hands. But ALS Worldwide — a nonprofit that was set up by Stephen and Barbara Byer, the parents of Ben Byer, who died of ALS in 2008 — are trying a different strategy. Stephen says he’d been interested in a compound called dexpramipexole for years as a potential treatment for ALS. When he learned in 2010 that Biogen Idec was going to launch a late-stage clinical trial of the compound to try for FDA approval, he contacted the company and asked if it would help ALS Worldwide set up a so-called compassionate-use trial. (Sometimes companies agree to make a drug available to a small number of patients who don’t qualify for a formal clinical trial but still want to use the drug under a doctor’s supervision and FDA oversight.)
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Neuroscientists from UCLA have developed a system to measure communication between stem cell–derived motor neurons and muscle cells in a Petri dish.
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A new Northwestern Medicine® brain-machine technology delivers messages from the brain directly to the muscles – bypassing the spinal cord – to enable voluntary and complex movement of a paralyzed hand. The device could eventually be tested on, and perhaps aid, paralyzed patients. “We are eavesdropping on the natural electrical signals from the brain that tell the arm and hand how to move, and sending those signals directly to the muscles,” said Lee E. Miller, PhD, Edgar C. Stuntz Distinguished Professor in Neuroscience at the Feinberg School of Medicine, professor of biomedical engineering (by courtesy) at the McCormick School of Engineering, and the lead investigator of the study, which was published in Nature. “This connection from brain to muscles might someday be used to help patients paralyzed due to spinal cord injury perform activities of daily living and achieve greater independence.” The research was done in monkeys, whose electrical brain and muscle signals were recorded by implanted electrodes when they grasped a ball, lifted it, and released it into a small tube. Those recordings allowed the researchers to develop an algorithm or “decoder” that enabled them to process the brain signals and predict the patterns of muscle activity when the monkeys wanted to move the ball.
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