The gene therapy experiment was largely funded by Project ALS, an innovative charity founded by ALS-sufferer Jenifer Estess and two of her sisters.
The illness may also be potentially tied to higher rates of amyotrophic lateral sclerosis (ALS) -- more commonly known as Lou Gehrig's Disease -- among Gulf War veterans than veterans of other conflicts.
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
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 ).
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
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.
After quickly consulting Project ALS scientific advisors, who also were gung-ho, she cut a check to get the research started within days.
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.
FORBES: PatientsLikeMe Is Building A Self-Learning Healthcare System
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.
FORBES: Meet the Real Hero of Today's Super Bowl, Steve Gleason
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.
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.
FORBES: Does Coffee Drinking Really Protect Against Devastating Diseases?
Now Celebrex's maker, Pfizer (nyse: PFE - news - people ), is now conducting a large human trial of Celebrex in over 300 ALS patients.
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
Today Biogen Idec (BIIB) reported top-line results of EMPOWER, a Phase 3 trial investigating dexpramipexole in people with amyotrophic lateral sclerosis (ALS).
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