ALS News Center - Latest ALS News and Information
Packard scientist sheds light on nerve cell "nursery"
Last month, Packard scientist Hongjun Song reported findings that could shed light on central nervous system repair. As reported in the journal Nature, a Johns Hopkins team led by Song clarified how the adult brain's newest neurons become integrated into existing circuits - a key step in their becoming useful cells. Such work is foundational if you're trying to develop a stem cell therapy.
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CytRx expands ongoing Arimoclomol phase II trial for ALS
CytRx Corporation announced that it has submitted a protocol to the FDA reflecting its plans to treat patients in an open-label extension of its ongoing Phase II clinical trial with its orally administered, small molecule product candidate arimoclomol for the treatment for ALS.
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Cookbook offers a taste of something good for PALS
The Dysphagia Cookbook is a handy compendium of soups, sauces and desserts, contains healthy and visually appealing recipes that will interest those who have troubles swallowing, including people with neuromuscular diseases such as ALS.
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Enroll for new Medicare prescription drug benefit
On January 1, 2006, for the first time in the program’s history, Medicare began providing prescription drug coverage. Enrollment in the new prescription drug benefit, also known as Medicare Part D, is voluntary, and the open enrollment period will continue until May 15, 2006. “For people with ALS who are eligible for Medicare, the new benefit may provide significant savings over their current drug costs, especially if they currently do not have coverage,” said Pat Wildman, ALSA’s Director of Federal Advocacy Outreach.
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Filmmakers focus on family, ALS
Documentaries are intimate by nature, but even so, filmmakers Steve Ascher and Jeanne Jordan knew they were asking a lot of Stephen Heywood and his family. At 29, Heywood was diagnosed with the paralyzing neural disorder ALS, which meant he might have only two to five more years to live. Stephen's older brother, Jamie, refused to accept that and started a foundation to find a cure for ALS.
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Students raise $137,000 to fight ALS
Northport High School students (Long Island) gathered more than 400 people at Oheka Castle to celebrate the second annual Midwinter Night’s Dream on January 11, through which they raised more than $137,000 for ALS research in the name of former district teachers (and ALS patients) Chris Pendergast and David Deutsch. Actor Billy Baldwin was present at the event and he raised more than $18,000 on the spot, gaining sponsorship for a Northport Middle School student shaving his head for the cause. Former Yankees Tommy John and Jim Leyritz also attended.
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Nanotechnology may help fight ALS
Scientists normally think big, but researchers specializing in a fatal disease that killed baseball legend Lou Gehrig are accepting the possibility that maybe they should think small. Small in the scientific sense, that is. Scientists in the field of nanotechnology joined ALS researchers at a meeting to attempt a unified search for treatments.
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ALSA awards Treat ALS funding to three clinical efforts
The ALS Association has funded three proposals through its new TREAT ALS initiative, Translational Research Advancing Therapy for ALS, a program that accelerates discovery and testing of clinical candidates for amyotrophic lateral sclerosis (ALS, also called Lou Gehrig's disease).
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Family gives 1 million for ALS research
A $1 million gift from the Kozmetsky Family of Austin, Texas, will enable scientists at the Burnham Institute for Medical Research to incorporate human stem cells as a resource in their work on Amyotrophic Lateral Sclerosis [ALS]. The gift, which originates from Ronya Kozmetsky and Cindy and Greg Kozmetsky, will provide seed funding to investigate the potential of stem cell therapy replacement as a potential treatment for ALS.
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Actor James Woods to play ALS patient on 'ER'
Actor James Woods worked with the ALS Association to prepare for his "ER" role as a professor with ALS. The Feb. 2 episode of the NBC medical drama is devoted to Woods' character, Dr. Nate Lennox, and his battle with the debilitating neurodegenerative disease.
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He's navigating rough waters
Nick Scandone has Lou Gehrig's disease but still competes and is the 2005 Rolex yachtsman of the year.
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Fighting back against ALS
Avichai Kremer, a 32-year-old Israeli pursuing his master's degree at Harvard Business School, was shocked when he was diagnosed with ALS. But although 18 months have passed since that terrible day, he no longer wants to jump off a tall building. Instead, this impressive young man is fighting not only for his own life but for the 500 ALS victims in Israel and the one in 10,000 around the world. Kremer has helped to raise over 1.5 million dollars.
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Research Updates from ALSA
The latest ALS research updates from the ALS Association's national office.
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Researchers uncover new toxic mechanism in ALS
New ALS studies strengthen earlier theories that whatever ultimately tips motor neurons onto their downhill path likely comes from outside the cells. The work describes a mechanism in which a warped, toxic molecule is secreted from cells into a motor neuron's environment, where it harms the neuron.
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Beyond the reach of hands--a potter's plight
Potter Phil Chapman is a firm believer in shaping new and useful things from what has been given. It's a philosophy that he and his wife and fellow potter, Trista, hope to apply to his recent diagnosis of ALS--a life-threatening condition that the couple hopes to fend off, or even to defeat.
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12 year old builds bridge for dad with ALS
Seventh grader Dylan Prevost can teach most adults valuable lessons; about seeing a need and filling it, or sacrificing pleasures for a greater good -- lessons he demonstrated by building a bridge for his dad who has ALS.
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Neighbors fix meals for family struggling with ALS
Potluck suppers bring friends and neighbors together, but there is one in Shaler, Pennsylvania that is far from typical. Instead of everyone bringing a dish to share, nearly 40 families are pitching in to bring a supper every weekday to their neighbors, Eric and Mary Lou Zydel, and their children. Mrs. Zydel has ALS. Her husband is her primary caregiver while also taking care of their two children, Courtney, 12, and Tyler, 8, and working from home at his engineering job. "I call them the dinner club," Mr. Zydel said of his neighbors. "They bring us a complete meal every night, Monday through Friday."
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Research Update from ALSA
Two clinical trials and a tool to aid trial investigators are the first projects funded through TREAT ALS, showcasing the rationale of this new initiative of The ALS Association that promises real progress in finding ALS therapeutics.
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Researchers create stem cell lines without using animal products
Scientists at the University of Wisconsin have created two new embryonic stem-cell lines, the first grown without animal products, officials say, removing a major obstacle to their potential use as cell therapies in people.
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50 take icy plunge to help neighbor with ALS
Snow covered the sand and clouds shrouded the sun, but that didn't stop 50 or so swimmers from making New Year's Day a beach day. Taking part in what's become an annual New Year's Day charity event at Oakland Beach in Rye, New York 50 swimmers lined up along the waterfront and bolted into the 40-degree waters of Long Island Sound. And then, almost as quickly, bolted out. The event raised about $3,000 for the Friends of Claire Foundation, a charity named for Claire Gormley Collier, who was diagnosed in 2003 with ALS.
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ALS robs skier of his passion
Jim Thompson skied for the first time at the age of 6, a boy growing up in Iron Mountain, Mich., skiing to school and back and falling in love with all that was winter. ALS has robbed him of just about everything now, even his ability to speak. It has left only the clarity of his mind.
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Saneron ties up with Life Cell for stem cell research in India
Florida-based stem cell research and therapy concern Saneron CCEL Therapeutics Inc, would invest Rs 60 crore over two years to launch its Indian arm for stem cell banking, research and therapy in the country. Saneron has tied up with the Chennai-based Life Cell for the purpose. The trials will begin early next year in India and Taiwan. They would focus on Amyotrophic Lateral Sclerosis (ALS) and stroke patients, who will initially be treated in India and later on in Taiwan. The first trial for ALS is designed to evaluate the safety and efficacy of potential treatments in order to bring new and effective therapies to market.
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South Korean stem cell pioneer called a fake
outh Korean cloning pioneer Hwang Woo Suk never made any of the 11 stem cell lines he claimed were derived from the DNA of sick and injured patients, an expert panel investigating the controversial scientist.
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Cloning expert: Use Embryonic stem cells on terminally ill
Human embryonic stem cells should be used on willing terminally ill patients even if such treatments have yet to be proven safe in animal laboratory experiments, in the view of cloning pioneer Ian Wilmut.
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'Extra Hands' for ALS patients
Extra Hands for ALS was founded in 2002 by Jack Orchard, who was diagnosed with the disease when he was 34. The organization matches high school and college students with families dealing with ALS. Volunteers agree to spend two hours a week with the family throughout the school year. A mentor also works with the volunteers, who perform tasks ranging from cleaning house to shopping for groceries.
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Scientists explore new directions in ALS research
Researchers will test the effectiveness of transforming growth factor alpha infusions in mice who have a condition similar to the form of amytrophic lateral sclerosis (ALS) that runs in families.
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White Plains councilman battling ALS
Robert Greer is slowly letting go of the things he loves — the Handel concerts at Lincoln Center, driving, the gym, his independence — but he is keeping a tight hold on a pledge he made to himself when Lou Gehrig's disease began gripping his body two years ago.
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Exercise plus gene therapy shows promise for treating ALS
A study in mice gives hope that a combination of gene therapy and exercise may extend the lives of people who have Lou Gehrig's disease.
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Passages: David Cotcamp
We are sad to announce that David Cotcamp passed away from ALS on November 15th. His life long partner, Laurie Webster says he was a gift from God and he taught her how to live no matter what life had to offer. He loved his grandchildren, whom he adopted just 2 months before we knew he had ALS. He was a avid visitor to the Ride for Life website, which Laurie says brought him so much hope.
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Controversial Chinese neurosurgeon gives hope to paralysis patients
Over 800 patients who have been seen by Dr Huang Hongyun's clinic in the Beijing Xishan Hospital Huang, whose controversial approach to treating Amyotrophic Lateral Sclerosis (ALS) and spinal cord injuries by injecting cells from aborted foetuses has been sceptically received by many western medical experts.
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Cannabinoids show long-term benefits for MS patients
Long-term administration of oral mariijuana extracts reduces MS-associated pain and improves mobility, according to a new study. Previous studies investigating the impact of cannabinoids on animal models of MS, Parkinson's disease, and Amyotrophic Lateral Sclerosis (Lou Gehrig's disease) have found that the compounds inhibited the diseases' progression.
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Vets battle a deadly enemy
During his 27 years in the U.S. Air Force, Dan Bourson hardly touched down. Hawaii. Alaska. Japan. Texas. The retired lieutenant colonel was stationed in at least 10 different places. But these days, Bourson can't get his feet off the ground. Literally. The Colbert resident has ALS. The deadly condition is more likely to afflict veterans than the general population.
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Gulf War research spending falls short of pledge
Despite pledging to spend $15 million a year on Gulf War illness research, the U.S. Department of Veterans Affairs spent only $400,000 this year on studies of how toxic substances affected the war's soldiers, says an advocate for the veterans.
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Mice with ALS exibit 'athletic' gate prior to symptoms
Scientists from Harvard Medical School and Mouse Specifics, Inc. presented new data regarding "athletic" gait in the early stages of ALS in genetically modified mice. The new findings in this model indicate that presymptomatic heightened motor function and motor coordination could occur early in ALS, and open new lines of thinking for prevention and treatment of the disease.
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Gene therapy and exercise shows promise for treating ALS
A new study in mice gives hope that a combination of gene therapy and exercise may extend the lives of people who have Lou Gehrig’s disease.
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ALS is on the rise
"My impression, and that of other directors of major ALS clinics, is that we have seen a higher incidence over recent years," says Dr. Angela Genge, clinic director for ALS at the Montreal Neurological Institute.
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Discovery of genes that control motor function
In a landmark finding that could have huge implications for a variety of diseases - from paralysis to Lou Gehrig's disease - scientists at Columbia University Medical Center have discovered a set of genes that assign a role to specific types of motor neurons.
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"I don't want people to feel sorry for me"
Tim Gribben does not want pity. He is open to well wishes. He genuinely appreciates concern. He is thrilled when questions turn to his family, particularly his two young sons. And he beams when he talks about his football team, the Idalia Wolves, Colorado's 6-man stalwarts who begin the playoffs Friday night in search of their fifth state championship since 1998. Just no pity.
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Living, loving, and pushing on
As he entered the year 2001, James Hutton had every reason to be happy. He was newly married, had a custom-built home, and a job he loved. A few months later he was diagnosed with ALS. Hutton, 46, now has little control over his body. It seems he has every reason to despair. Yet his wife says he doesn't.
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Renewed funding for axon regeneration project
The ALS Association continued funding to Stephen Strittmatter, M.D., Ph.D., of Yale University in New Haven, Connecticut, to support an ongoing effort to understand the factors that prevent damaged nerve fibers from growing back.
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Biomarker research shows promise
The ALS Association announced continued funding to support an ongoing consortium effort to find biomarkers that indicate the presence of ALS. The project has already produced a candidate panel of molecules in body fluids that differ between people with the disease and those who do not have ALS. A predictive panel of biomarkers would allow more rapid and accurate diagnosis for patients who often undergo months of tests and uncertainty before finding out whether they have ALS.
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ALSA Monthly Journal News for October 2005
A monthly review from the ALS Association on the latest developments in the field of ALS research.
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Clues to cell death in ALS
Neuronal cells clogged with a mutant protein associated with ALS die within hours after the clumps first form, researchers report in this month's Journal of Cell Biology. The finding directly links aggregation of malformed proteins with cell death characteristic of the disease, the authors claim.
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Parkinson's treatment may help ALS
BrainStorm Cell Therapeutics reports it withdrew stem cells from a brain of a rat in which Parkinson’s disease had been induced, sorted them into cells that produce a protein called GDNF, and implanted them back into the rat’s brain. The rat’s symptoms improved by 60% within three months. The treatment might later be approved to help people with ALS.
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'Henry Ford of exercise industry' raises money for ALS after diagnosis
Augie Nieto first noticed his life had changed when he struggled to lift the same weights he had lifted every day for 30 years. Must be getting older, Nieto, 47, thought.
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Facing ALS one day at a time
She can no longer speak and struggles just to make it up the short flight of stairs to her bedroom each night. But June Moore, a 71-year-old Stromsburg, Nebraska woman with ALS, doesn't spend time asking, "Why me?"
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A voice for those unable to speak
University of Illinois graduates Mike Callahan and Thomas Coleman have come up with a new means of communication for those unable to speak. Specifically, they've designed a system that detects what those people are trying to say. Their invention could make communication easier for people with spinal cord injuries or ALS.
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Hope, love and ALS
In the two years since being diagnosed with ALS, Darcy Wakefield, a 35-year-old writer and mother has lost the ability to talk, to walk, to type on a computer keyboard and to turn over in bed. She's also spent most of those two years promoting ALS awareness with astounding tenacity.
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ALS Registry Act introduced in Congress
The Advocacy Department of The ALS Association (ALSA) announced that Congressmen Eliot Engel (D-NY) and Lee Terry (R-NE) introduced the “ALS Registry Act,” H.R. 4033, in the U.S. House of Representatives on Friday, October 7. A bipartisan group of forty-five Members of Congress joined Reps. Engel and Terry as original cosponsors of the bill.
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ALS patient fights to be herself
Penny Keenan stepped into her Labrador retriever's pen, lost her balance and fell into a harsh new reality. It wasn't that she didn't have time to catch herself. It was that she couldn't. Nor could she get up. Fifteen minutes and a cell-phone call later, her husband, Les, came to her rescue. The fall was the first brutal blow in the relentless march of a disease that would soon freeze Penny in her own body.
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Kentucky Hospital Clinic now an ALS center
The ALS clinic at the University of Kentucky and Cardinal Hill Rehabilitation Hospital has become the 23rd ALSA Center(SM) certified by The ALS Association (ALSA), the nation's preeminent leader in the fight against ALS.
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South Korea to lead new stem cell center
A multi-national partnership led by South Korean researchers soon may be cloning human cells to generate embryonic stem cells for research intended to lead to insights into various disorders, including ALS.
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ALSA developing zebrafish model of ALS
The ALS Association announced renewed funding of a continuing effort to create a model of ALS using zebrafish. An additional two years of funding should allow the team to produce and characterize sets of fish that show symptoms of ALS to understand the biology of the disease process and to help design new treatments.
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Investigators shed more light on cell death in ALS
Mutated protein responsible for some inherited ALS forms a network within cells that traps vital cellular machinery, findings that should lead scientists towards new therapeutics
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Flu shots offered to people living with ALS
The Muscular Dystrophy Association will provide free flu shots to people with any of the more than 40 neuromuscular diseases in the Association's program. Having a progressive neuromuscular disease that damages the muscles responsible for lung function makes influenza much riskier. The flu is particularly dangerous for those with ALS.
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Patients are becoming a driving force behind developing new drugs
Patient-driven approaches to developing drugs for orphan diseases are turning pill-takers into pillmakers. Some patients are even setting up biotech firms in hopes of finding a cure or treatment for their illnesses.
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ALSA news recap (September 2005)
This is the the ALS Association Monthly Journal Recap for September 2005 from Roberta Friedman, ALSA Research Department Information Coordinator
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ALS patient will compete in Ironman Hawaii triathlon
The Ironman competition is a grueling test of skill and stamina involving swimming, biking and running a combination of more than 140 miles. For 34 year old Jonathan S. Blais, it will be even more of a challenge. Mr. Blais was diagnosed with ALS in May, and plans to take part in Ironman Hawaii in mid-October.
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Ten-pinner won't be bowled over by ALS
For 43 years, the ladies of the Auburn Women's Bowling Association have been in good hands under the supervision of a one determined and deeply committed woman, who has been a friend, a part of the family and their president. At 89, Frances Lansbury has seen bowling inside and out and has enjoyed it all. Now, ALS offers Frances a new challenge.
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ALS patients given new means of communication
A new communication device, which can judge whether a person wants to say yes or no by measuring changes in his or her cerebral blood flow, has been developed for patients suffering from severe amyotrophic lateral sclerosis (ALS).
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