Tag Archives: media

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Open Book – Pt. 2

(sorry for the long delay between parts but I was engaged in other projects, and I had to find the top of my head)

As I said in Part 1, Elsevier, a multibillion-dollar scientific publishing company, is trying to present itself as a friend of Open Access.

Is this a joke?

Elsevier was behind a recent lobbying effort to bottle taxpayer-funded scientific research behind their paywalls. The very lifeblood of this company is its ability to keep research papers behind its subscription system. This is like Microsoft touting an Open Source initiative. This is like a lion touting a vegan diet. 

The key behind Elsevier’s business model is in the traditional name for scientific publications: papers. Believe it or not, there was a world before The Internet, when companies would disseminate information on bound collections of flat pressed dead trees. This required large installations of printing presses and binderies, and a network of distribution to deliver these papers to your door. Now there is electronic distribution which significantly lowers costs. However, Elsevier continues to charge excruciating prices for access to the very many journals it controls. Not content with that, it actually tried to buy a law that taxpayer-funded research would also be hidden behind their subscription system, even though taxpayers funded the research and funded creation of the distribution system it now uses!

The scientific process was built on collaboration and free exchange of ideas. Science was originally done by citizens enraptured by the pure pursuit of knowledge (think Benjamin Franklin). It later became a creature held captive by institutions, and its dissemination captive to those with physical distribution channels. However, now with The Internet and the access to learning and communication it provides, citizens are again becoming more involved with science. The return from discovery was never in the information of how you got there, but from the end product itself (don’t get me started about the perversion of patent law and how much that stifles innovation…).

Distribution is now extremely cheap, and business models must adjust to this new reality or get out of the way. In fact, the reality is that distribution can be done by the authors themselves and more each day are turning to free and open publication. This is the new wave that Elsevier is trying to ape. Don’t be fooled. Elsevier is not Open Access – they are Open Wallet.

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Open Book – Pt. 1

Earlier this year I wrote about publishers who want to hide public research information behind paywalls. Well I walk my talk. On October 20th, I personally delivered a speech to the Open Science Summit 2012. You can see my full presentation here (at 47:40.00). You can also view the video portion of my presentation on Youtube.

I have a little more to say about open publishing coming up in my next post as soon as I find where the top of my head landed…
(those who follow my tweets might already know what’s coming)

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Cross The Blogosphere

I would like to direct my readers to the blog of my friend Dan Munro. Dan writes, quite intelligently, about the healthcare space with a focus toward Information Technology (IT). As healthcare goes more and more digital in terms of research, treatment, and record-keeping, IT is critical to that development. As with the Internet boom, many gizmos and techniques will rise and fall away. Dan does a great job of sorting through it and his blog is worth a bookmark.

You might remember Dan from an earlier post featuring me. The earlier post was about the oral sodium chlorite project I created. Today Dan posted Part 1 of a 2-part series on “Biohacking”. This is the result of his own research and some discussion we had about a project in which I am involved. Part 2 comes out next week, authored by yours truly, so stay tuned!

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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.

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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,


people putting up extensive Pinterest boards,

ALS can affect everyone

and people creating their own video PSAs


in an attempt to reach out to and educate others who aren’t already personally affected by ALS.
I would like to call special attention to my friends at Bed & Biscuits who are doing a local event at their store. Owner Laurie Chadwick and husband moved to Oregon to care for their son Rob after he was diagnosed with ALS. She keeps her business going and does the event mentioned above a few times a year. This is a truly remarkable effort and I hope my readers in the area would take their furry (non-human) children down for a nail trimming to support this event.
There is a lot of action happening by PALS, CALS, and friends. There are even concerned corporate entities trying to make a difference. What is noticeably absent is a national effort by a certain representative organization. This multi-million dollar annual budget organization went to the trouble of creating a rather good PSA featuring Jason Alexander (of “Seinfeld” and other famous work). However, instead of pushing it aggressively on national television, the organization asks those it represents to send around a link via email and social media. This half-baked distribution strategy is clearly unacceptable and example of how the organization works in every area of its operations. This organization can be better, should be better, and we should demand that it be better.
It’s National ALS Awareness Month. Crippled and dying people and their families are exerting considerable energy trying to help themselves. Organizations that collect millions of dollars in donations (approximately half of it from the estimated 30,000 PALS alive during any given year) should be doing more to educate the general public than their individual constituents.

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It’s ALS Awareness Month. As per usual, certain advocacy agencies are content with passive website pages and extolling their constituents to do the heavy lifting of spreading the word (a practice that has dramatic fall-off beyond the tiny individual circles of family and close friends). The agencies bleed enough contributions from the constituency to pay salaries and provide token services (with no consistency between Chapters). Meanwhile, The general public is still unaware and uninformed about the deadly lottery that is ALS.

Up until very recently, ALS was a disease of silence. As Person(s) with ALS (PALS) progressed, they lost their abilities to communicate and mingle in their communities. Very quickly they were shut away in homes or hospitals to die in mute angst with a capable mind trapped in an inert body.

With the advent of social media, as well as the technology of mobile computers with eye-tracking input systems and text-to-speech synthesis, PALS are able to compete on an even footing in cyberspace with more physically capable people. Many of these PALS are in serious medical conditions such as near total paralysis with some on mechanical ventilation via tracheotomy. As the astrophysicist and PALS Stephen Hawking said, “My body may be crippled but my mind is free.” Tech-savvy PALS are able to use combinations of technology to dramatically increase their standard of living, to contribute to research about the disease, and even band together to lobby government to speed up access to promising pharmaceuticals. As wonderfully-explained in a recent forbes.com article, “Technology is the cure” (thanks to Steve Saling for coining that phrase).

On a personal note, technology is saving my life. Many years ago my father was in the US Air Force flying support missions for the Apollo moon flights. On occasion I would be in ARIA control watching technicians tending to walls of huge computers. I thought that was the neatest thing ever. Years later, I was blessed to turn a childhood hobby (began when I commandeered my dad’s IBM PC in 1980) into my career, and I now have in front of me more computing power than all the Apollo vehicles combined.

When I was diagnosed, I knew that my ability to communicate was going to disappear. Knowing that hands-free computer technology existed, and already having a long-term presence in “cyberspace”, I knew that I would be able to be social and productive as my physical ability declined. This was paramount in my decision to accept mechanical ventilation. Without the ability for my mind to escape my physical confinement, I would have years ago allowed myself to succumb to ALS. Instead I have remained active and have had the extraordinary privilege to meet and participate in the global ALS Community.

Unsatisfied with the level of advocacy and awareness generated by organizations with that as their claimed mission, PALS in the global ALS Community are taking it upon themselves to increase awareness and advocacy, and are placing pressure on those representative organizations to change old operating procedures. Other organizations representing other medical conditions are very vocal and aggressive in public awareness (the foundation of funding and national priority for research) and this new group of PALS demand commensurate action from the organizations representing them. The new computer technologies, mobile devices with apps, and ubiquitous connection to the Internet and social media allows PALS to congregate, exchange ideas, and mobilize. No longer are they shut away and forgotten.

This month, are aware or are you just a ware for fundraising that does little?

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Under Press-Sure

Over the past two weeks ALS has gotten some much-needed national coverage, first from the Wall Street Journal followed shortly by ABC News. I also just completed the first round of questions for an article due to appear in July in the-scientist.com. More opportunities seem to be materializing and I will do my best to keep the momentum going to keep the message of ALS in front of the public. I would like to call upon everyone to contact their local press, mention the WSJ and ABC News articles, and tell them YOUR stories. If you think it would help to mention a relationship to me, do so and I will back you.

There were a few points in the articles that I wanted to clarify:

  • I did not design the computer I use. It is a TabletKiosk Sahara Slate PC i440T with a Point Grey Flea-2 CCD camera with an infrared light and lense. The system uses the ERICA software made by Eye Response Technologies (since purchased by DynaVox). The only part of the computer I modified was my work environment and I installed certain programs and utilities which I use. I did help design the overhead mount which slides along the overhead track I use for my lift.
  • NP001 is indeed sodium chlorite, but when ingested orally the acid in the stomach breaks down most of it. The most optimistic data I have seen (based on rats exposed to it in drinking water) is a maximum 30% reaching the bloodstream. I would expect that to be less, and to be variable, in most people.
  • Because NP001 is already in clinical trial, I arranged the project more as an “early access” model with data-keeping as secondary.
  • I have three criteria for any such projects:
    • drug must be relatively safe
    • drug must be inexpensive
    • drug must be legal to obtain

It’s very important to me that I don’t recklessly put other PALS in physical, financial, or legal jeopardy with any project. My intention is to help not harm. We all already have enough problems to deal with.

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DANGER – Public Access To Research

I rely quite a bit on public access to research papers in order to better understand ALS and to bring you this blog, for what it’s worth. The US Taxpayers, through NIH grants, fund quite a lot of the medical research that is done in the United States. If we paid for this research, we should be able to have access to the results (which, again, we already paid for).

However, a bill is being introduced to take that away. The bill is sponsored by Carolyn Maloney (D – NY) and Darrel Issa (R – CA). Ms. Maloney received the most individual political contributions of the medical publishing giant Elsevier in 2011. Mr. Issa is also on the contribution list. Once again we see that corporate money in politics does not favor the citizens. This is not a political blog so I will cease my digression.

Clearly this is a threat to public access to knowledge which the public already owns. This public knowledge benefits people like me and you as well as institutions such as schools. If you want to retain your rights to access that for which you already paid, action is needed. I urge you to contact your Congresscritter and urge him or her to kill HR 3699. You could also contact Congresswoman Maloney to express your opinion of this bill:
Twitter: @RepMaloney
Phone: 202-225-7944
FAX: 202-225-4709
Email: Use this form

Don’t let corporations steal from you and charge you for the favor.

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Growing Grass

A few weeks ago, Professor Stephen Hawking was quoted in The Guardian newspaper saying “there is no Heaven; it’s a fairy tale.” Shortly after, two radio “shock jocks” in the Houston market decided to take issue with Professor Hawking’s words by belittling his condition and questioning his abilities. I won’t repeat their attack, but it was immature and offensive to all people affected by ALS.

In response to their attack, a Facebook group was formed to boycott the radio personalities and the advertisers on their network of stations. The goal was formed to not just demand an apology but to make this a teachable moment by demanding that the parent company, Clear Channel, also air multiple PSAs. In addition, Clear Channel agreed to a 30-minute interview featuring Steve Perrin, the CEO of ALS-TDI. All of the boycott group’s demands were met.

This marks a major event in awareness for ALS. An organized grassroots movement was formed via social network tools and used those tools to achieve a goal long-sought in the community. This is only the beginning, and a perfect example of the kind of the cooperative relationship we need to foster with media, local and national.