Saturday, November 26, 2011

A Picture Is Worth A Thousand Disconnected Patient Files

Please take a look at this article (thanks to @paullikeme and @epatientdave for the tip) --

Now imagine how constructive it would be for physicians to supply a similar template to all newly diagnosed ALS patients to fill in some history of symptoms, of health, and of environmental exposures.

It might even be therapeutic for people to write things down in a manner that could be shared and that could contribute to the set of clues that scientists and other patients need to deal with ALS.

Simple. Visual. Direct. Valuable. Four words that are seldom seen together when dealing with ALS.

Sunday, November 20, 2011

Who Wants To Tell A Very Interesting Story With Numbers?

Dr. Google brings many people to this site.

So if Google brought you here and you happen to be a journalist interested in telling a very interesting story with numbers, please write yourself a note. A clinical trial by Neuraltus with the experimental drug NP001 has been providing some very interesting numbers reported by trial participants who post data at .

This morning Sleepy happened to watch this video with Lizzie O'Leary --

There is a story with numbers about ALS that will knock the socks off the subprime mortgage story if NP001 is something that might actually work to save hundreds of thousands of lives. There are data. There are some compelling faces to put on the story. There are patients in the trial noticing things happening... some good and some not so good. Anything good is a huge breakthrough with ALS. There are patients who didn't qualify for the trial who are trying to reverse-engineer the active ingredient so that they can try a do-it-yourself trial. There are business leaders who will have difficult decisions to make. There are regulators watching. This is a very interesting story with numbers and with people who can bring those numbers to life.

Who wants to tell an interesting story of numbers that are starting to speak?