An international study led by biologists and neuroscientists from the University of Pennsylvania, published this week in Nature, has identified a new genetic risk factor for amyotrophic lateral sclerosis, which is commonly known as ALS or Lou Gehrig’s disease.

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Steve Saling talks about being lucky and as happy as he has ever been, which might seem odd, given that Saling cannot speak, walk, or move his hands.

Saling was diagnosed with Lou Gehrig’s disease four years ago, a month after the birth of his son. Instead of despairing, he went into overdrive, determined to use technology to stay one step ahead of the relentless and usually lethal disease. Now he is blazing a path for many others.

Through a chance encounter shortly after his diagnosis, he teamed up with Barry Berman, chief executive of the Chelsea Jewish Foundation, and helped to design the nation’s first residence for ALS patients needing nursing care. Using customized infrared technology, patients have far more independence than in a typical nursing home.

Saling, who once specialized in making public parks accessible for disabled people, is its first resident.

The Leonard Florence Center for Living’s Steve Saling Residence officially opened yesterday in Chelsea. Tiny infrared transmitters in the ceilings connect to a master computer in the basement. This allows its residents to use small computers on their wheelchairs to summon an elevator, open and close doors, turn lights, televisions, and DVDs on and off, control the heat and air conditioning, even order meals from the cafe downstairs.

“My whole life has perfectly prepared me to be right where I am today,’’ Saling wrote in an introduction for the opening of the 10-bedroom residence. “I was a very good landscape architect and I am proud of my professional achievements, but my most important work will be done after I got ALS.’’

With a mischievous smile, Saling recently demonstrated his masterpiece.

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ALS diagnosis for ex-Patriots player; NFL considers aid.

Kevin Turner was strumming his guitar about 18 months ago when the fingers of his left hand suddenly stopped listening to him. Maybe it’s arthritis creeping in, thought the former New England Patriots fullback, or lingering effects from many a football injury.

“I was telling them, make a G chord,’’ he said, “and they wouldn’t move.’’

Turner, known on the gridiron for his punishing blocking, had been shrugging off growing weakness in his hand, but now he couldn’t ignore it. He had surgery to fix the neck injury that ended his career, thinking that may have caused the hand problem. But there was no improvement, and the weakness spread to his right arm.

Testing recently brought a stunning diagnosis: amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease.

The 41-year-old Alabama native is the 14th former National Football League player known to be diagnosed with the often-fatal and incurable nerve disorder since 1960. That’s a rate eight times higher than the rest of the adult male population.

So many former players have been diagnosed with ALS that the NFL is considering whether to provide benefits to help with their care, league spokesman Greg Aiello told the Globe yesterday.

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Study Shows Repeated Head Traumas May Raise Risk of Symptoms Seen in Lou Gehrig’s Disease

Did Lou Gehrig Have Lou Gehrig’s Disease?

The new findings suggest that professional baseball player Lou Gehrig may not have died from Lou Gehrig’s disease.

“Maybe Lou Gehrig had chronic traumatic encephalopathy,” Cantu says. He sustained at least five documented concussions during his career. In addition, there are reports that he was knocked unconscious for five minutes after being struck in the head with a ball. He also played football at Columbia University before joining the New York Yankees.

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ALS Research Roundup

August 20, 2010

News on the latest research, as of June 2010!

Article Highlights:

  • Neuraltus targeting immune system cells
  • Stem cell trial at Emory on track
  • Participants needed for biomarker study
  • Work of breathing is being studied
  • Talampanel fails to slow functional loss
  • Ceftriaxone trial is still open

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News from the ALS TDI

August 20, 2010

In continuing efforts to refine its preclinical drug development program, the ALS Therapy Development Institute (ALS TDI) of Cambridge, Mass., has added a new research mouse model to its operations, along with two new projects aimed at helping researchers test and develop therapies in the new mouse.

The Institute also has increased its emphasis on the study and use of biological indicators called “biomarkers,” and is working on practices designed to hasten ALS drug development industry-wide.

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Please contact: michaelmanninginfo@gmail.com

Having been both a passenger and driver of the van myself, I can attest that it’s a great ride!

Please spread the word!

Thanks,
~ Liz Mackney


Although familial, or inherited, ALS (FALS) and the sporadic (uninherited) form of the disease demonstrate similar progression patterns after symptoms appear, the causes for sporadic ALS remain elusive, while a number of genetic mutations that cause FALS have been — and continue to be — uncovered.

Such progress in FALS research was the focus of an hourlong webinar broadcast March 25, 2010, by the ALS Therapy Development Institute in Cambridge, Mass. In addition to advances in technology that are making it easier for scientists to probe the mechanisms that drive FALS, a growing body of knowledge is revealing targets at which researchers can aim therapeutics, reported ALS TDI CEO and Chief Scientific Officer Steve Perrin.

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Velma Yannayon, of Eastanollee, Ga., made soup for supper and had just sat down to eat when she felt herself grow faint.

She put her hands on the TV tray to steady herself, and that’s the last thing she remembers. Her husband Theodore, who has ALS, watched her topple over, knocking her soup bowl to the floor.

Theodore, who received his diagnosis in 2007, was able to move to his wife’s side and shake her until she awoke a moment later. He called their neighbor, a registered nurse, and she came to check on Velma. Although the incident turned out OK, it got the couple thinking.

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