In today’s issue of the journal Science two papers describe the discovery of a new gene for ALS (you can read the abstracts here and here). Around 90% of ALS cases are sporadic, i.e. we don’t know what causes them, but for 5-10% of patients the disease runs in their family (known as familial ALS,… Continue reading A new gene for ALS: What sharing your genetics could mean for research
Tag: Research
ALS Symposium 2008: A history of ALS online
Back in November, Jamie Heywood and I attended the 19th International ALS/MND Symposium in Birmingham, UK. As part of an ongoing series of blog posts reporting from that conference, I have put together a narrated slideshow which is an abridged version of a platform presentation I was asked to give at the conference about the… Continue reading ALS Symposium 2008: A history of ALS online
Bringing you Medicine 2.0
Last week, PatientsLikeMe presented a keynote address at the inaugural Medicine 2.0 Congress in Toronto, Canada in front of 200 researchers from 20 countries. A new, annual international conference on Web 2.0 (social web) applications in health and medicine, this year’s event was centered around the theme: “Building Virtual Communities and Social Networking Applications for… Continue reading Bringing you Medicine 2.0
More Than Meets the Eye: Non-motor Symptoms in Young-onset Parkinson’s Disease
Most people think of Parkinson’s disease (PD) as a condition of aging, and most of the time they’re right. Looking at the population as a whole, about 1-2% of people over the age of 65 have PD, and it’s usually a condition that is most severe in patients in their 70’s and 80’s. However, about… Continue reading More Than Meets the Eye: Non-motor Symptoms in Young-onset Parkinson’s Disease
It’s been two years!! ALS Community Report
PatientsLikeMe was born of a passion to provide the best tools for patients to participate in their own care, share experiences and change the way medical research is done.Thanks to our members and the dedication of our growing team, our first community, ALS, has now been open to the public for two years! The community… Continue reading It’s been two years!! ALS Community Report
Does It Work? Lithium and ALS
by James Heywood Update (March 7, 2008): PatientsLikeMe ALS Lithium Research released. Does it work? On February 12th of this year, Proceedings of the National Academy of Sciences (one of the leading science journals) published a paper entitled — Lithium Delays Progression of Amyotrophic Lateral Sclerosis. After 10 years researching ALS, I believe it is… Continue reading Does It Work? Lithium and ALS
Excessive Yawning or Constant Yawning in ALS/MND
The first thing we experience about yawning is an urge to do so, one that can be so hard to suppress that we end up gulping down an extra serving of air when we’re trying to appear interested, or polite, or awake. But what if you yawned even if you weren’t tired, or bored? What… Continue reading Excessive Yawning or Constant Yawning in ALS/MND