They had raised millions of dollars in a failed effort to find a cure for ALS and also ended up creating a data-sharing patient social network to go with it.
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The new trial would join a small number of other therapies in human trials for ALS, including a nerve-protectant called TCH-346 in second-stage trials at the Swiss drug firm Novartis (nyse: NVS - news - people ).
ALS, a disease of the nervous system, impairs muscle movement and eventually results in total paralysis.
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They used a questionnaire from conventional ALS trials to gather patients' self-reported data on functions such as swallowing, walking, and breathing.
WSJ: ALS Study Falls Short, But Use of Social Media Holds Promise
As the city becomes a new center for health care and innovation, the question is: could New Orleans become a center where diseases like ALS are researched and cured?
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But aging for most isn't about a rapidly degenerative disease like ALS. Most of us face aging on our 30th, 40th and 50th birthdays -- when we yearn for the carefree days of youth.
Only a handful of people know this about me, but five years ago, my father died of amyotrophic lateral sclerosis, or ALS. This is a fatal disease that literally eats away at a person's muscles until they cannot walk, talk or even breathe.
Teacher Judith Paul and her husband, Terrance, a lawyer and education researcher, founded ALS in 1986.
The Project ALS success could also give a big boost to the gene therapy field, which has fallen on hard times after numerous gene therapy treatments proved ineffective or caused serious side effects.
You can find a summary of his story here, but in brief, his brother Stephen was diagnosed with ALS in 1998 , and Jamie immediately devoted his own life to finding a cure for his brother.
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Schreiner had been inspired by a friend of his named Matthew Mondoux, who'd trekked the same journey the previous year, walking from Buffalo to Yankee Stadium in a Lou Gehrig uniform to raise money for ALS research.
Now Celebrex's maker, Pfizer (nyse: PFE - news - people ), is now conducting a large human trial of Celebrex in over 300 ALS patients.
Exactly two years after being diagnosed with ALS, Gleason is now confined to a wheelchair and uses his eyes to operate a computer that allows him to move and speak.
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His site, Stem Cell Regen Med, at stemcellregenmed.com, says it can offer treatment for a long list of life-threatening diseases, including ALS, Parkinson's, Alzheimer's, cancer, brain damage and lung illnesses.
Researchers like Dr. Kevin Gusciwiecz presented findings that suggested that three or more concussions might be a trigger number and that the risk for Alzheimers, ALS, Parkinsons, premature senility and dementia increased exponentially at that level.
Two conventional on-going ALS studies are designed to see if lithium has a very small effect on survival, something the PatientsLikeMe study wouldn't be able to pick up.
WSJ: ALS Study Falls Short, But Use of Social Media Holds Promise
Today Biogen Idec (BIIB) reported top-line results of EMPOWER, a Phase 3 trial investigating dexpramipexole in people with amyotrophic lateral sclerosis (ALS).
Merit Cudkowicz, an ALS researcher at Harvard Medical School who was an investigator on a standard lithium clinical trial, said social network-generated data can offer valuable insights, but she cautioned that the PatientsLikeMe study was not a substitute for more rigorous studies.
WSJ: ALS Study Falls Short, But Use of Social Media Holds Promise
After quickly consulting Project ALS scientific advisors, who also were gung-ho, she cut a check to get the research started within days.
Project ALS is now negotiating with government regulators and undisclosed biotech firms to design a human trial that could begin next year.
Jamie Heywood founded PatientsLikeMe after his brother was diagnosed with the neurodegenerative disease ALS. Patients can share information about their experience and use the network as a resource.
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Gleason is about to open the Team Gleason House for Innovative Living, a state-of-the-art residential facility in New Orleans for patients of ALS, as well as multiple sclerosis.
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First, it is a retrospective case-control study and is therefore susceptible to reporting bias, meaning that people with ALS may report their coffee consumption differently from controls.
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