Response-able

I was recently alerted to a blog called Science-Based Medicine which had a post that was rather critical of me. The post was written by David Gorski, a managing editor of Science-Based Medicine. If you read the post, you can probably understand why I took a little umbrage to Dr. Gorski's characterization of my efforts. Below is my response to him, shared here for my readers' convenience.

Tobii Or Not Tobii

As many readers may already know, I am really outraged by the pathetically weak computer systems that underlie the Tobii (and some other systems...). For a device costing $20K one would expect more than a low-power 32-bit CPU and 1-2GB of RAM. The computer hardware would fetch around $500 by itself. Is the software and eyegaze device really worth $19K? Having licensed high-end software for corporate development use in my career, I can comfortably say no.

Thomas Ohlson - Guest Blog

I would like to introduce to my readers my friend Tom Ohlson. He was diagnosed the same year I was and we are both "venterloquists". Although the circumstances suck, I am glad to have met him and am excited to present the following as a guest-blog entry. I feel exactly the same way.
Last week, on the 4th of July, scientists announced they may have discovered the Higgs boson. Frankly, I think if it were not a holiday and if there was nothing else newsworthy taking place, this announcement would have still have received little notice despite the significance of this discovery. This is unfortunate for a myriad of reasons, not the least of which is how American scientific curiosity has been replaced by a need for superficial sensationalism. Dont take my word for it--just look at the amount of major network news airtime devoted to the Higgs boson announcement vs. the Tom Cruise/Katie Holmes divorce announcement. Still, the discovery of the Higgs boson sounded a clarion call across the planet--great discoveries are still out there to be made and with them, comes great hope.

UnBearable

The hit movie "Ted" has stirred up some controversy in the ALS Community. I usually ignore such jokes (and sometimes even laugh along, including bits involving Stephen Hawking and a recurring "Hawking-esque" teacher character in Family Guy a few seasons ago). But this was over the line. I have lived with ALS for 7 years. In 5 years, ALS took away from me everything I had built in the previous 20. It is currently robbing me of the most productive years of my life. Man to man, I hope you DON'T get Lou Gehrig's Disease.

MacFarlane and Wahlberg owe the ALS Community some awareness.

PALS can't bear Ted.

Petition for awareness.

New News

For those of you wondering about lapses in posting, I have been working on a few projects outside of the blog. One of them just made a little news. I am very happy to be working with Ryan Bethencourt and Halpin Neuroscience to identify promising therapy options for ALS and to work in guerrilla fashion to get them into trials. Stay tuned for more news on this and my other projects.

Pet The Petition

A few months ago, I posted about publishing companies trying to charge for access to research studies paid for by taxpayers. Today my friends at The Doctor Weighs In posted about a way for each of us to really make a difference in this fight.

The White House has an online petition system where citizens can weigh in on issues before the President. If the petition gets 25,000 "signatures" within 30 days of it being created, it will be presented to the President where it must become part of the policy discussion. This is a great way for We, The People, to address and direct our government (especially in these times of corporate-captured government).

There is a petition currently in circulation to demand that scientific research paid for with taxpayer dollars remain freely accessible to anyone wishing to read it. The current signature count is just shy of 16,400 and I strongly urge my readers to sign and share this petition by email and/or social media. Working together we can ensure our intellectual property isn't stolen and we are then charged for its return by the very thieves who stole it.

All Alone

It's the middle of ALS Awareness Month. Individuals have been doing an excellent job of pushing awareness in their local circles. This includes pet groomers holding awareness and fundraising events,