Tag Archives: kindle

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RTT Blues

Audio Podcast (192kbps MP3)
(video at bottom of text)

Hello and welcome back to the Cripple Command Center podcast. My name is Eric Valor and I will be your host for this episode. The Cripple Command Center, or C-to-the-3 (C^3), is where I live, also called The Blue Room. It’s where I make and produce this podcast. It has been a while since I published a podcast. I have had some personal and health issues including one that landed me in the hospital. Afterward I was quite exhausted and needed time to rest and recover. Turns out staying in the hospital is not good for you.

So, now to the news. First, I am pleased to announce that I have self-published a book of my own poetry titled “Hamachi Eyes”,written over the past few decades. It’s on my website under the About Me tab. I also have a bunch of my original food recipes under the same tab so have a look if you’re into the culinary arts. Ironic that I really got into cooking after I could no longer eat. Anyway, the book is about 89 pages of a journey through my interpretations of various experiences.

I think the first poem I ever wrote was when I was around 9 or 10 and I remember it being well received. That’s when I first felt I had a little talent in writing. Unfortunately I don’t have a copy so it’s not included in the book. You can freely download a copy in either PDF, Amazon Kindle, or generic e-book reader format. I hope you download a copy and enjoy it. Since publication I have had selections published in the New England Review of Books. You can also listen to an audio version of the interview I did in support or read it on the NEROB website.

Next, many of you have heard that Brainstorm will not be releasing its proposed therapy for ALS under the recently enacted Right To Try law also called RTT. I have been against RTT since it was first proposed because I knew that it would be ineffective in anything except reducing the ability of the Food and Drug Administration to properly oversee the safety of the drugs produced for sale by pharmaceutical companies. In fact, RTT is no different from the long-existing Expanded Access Program that the FDA created at the turn of the 1990s in response to the HIV/AIDS crisis.

The only difference between RTT and EAP is that the FDA now has a little less authority to halt experimental drugs and therapies that show issues in patients who obtain them outside of official clinical trials. Pharmaceutical companies have no compulsion to provide their products outside of trial and if they do, the patients obtaining them will be subject to large personal cost. And, according to the history of drugs and therapies in trial for life-threatening diseases for which no truly effective treatment options exist, the treatment probably won’t be effective.

What has happened is that patients, specifically Person(s) with ALS or PALS, have been used by the GOP to advance its decades-long deregulation agenda. I warned of this when it was being presented by PALS and we are seeing now that RTT won’t be effective. The Brainstorm product, Nurown, was the original target of RTT and it will not be provided.

Last, a bit of advice. If you tell a PALS that you love him or her, you better damn well mean it. We already have enough trauma to deal with than to have a mate vacillate and/or suddenly vanish. Nothing can deal a worse blow to the already fragile grasp on hope most PALS have. If you don’t mean it or aren’t fully committed then stay silent. False hope is worse than no hope.

Thanks for tuning in to the C-to-the-3 (C^3) podcast on ericvalor.org. Sorry it was such a short one. I am and ever will be Eric N. Valor, and until next time, breathe easy.

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Reddit AMA Guest Appearance

Reddit Tag-Along

reddit-logo

On Friday, November 18, 2016, I participated in a Reddit AMA as a co-guest in support of my friend, Jef Akst. Earlier this year she published a book titled Personal Trials: How Terminally Ill ALS Patients Took Medical Treatment Into Their Own Hands (available on amazon.com in both Kindle and paperback) about the Oral Sodium Chlorite Project I created along with Rob Tison and Ben Harris, and our journey through the DIY drug experience. Reddit asked her to do an AMA about the book and she asked me to tag along for the session to give the ALS patient perspective and as one of the subjects of the book.

It was my first time ever doing this and it was exhilarating. For two hours, Jef and I were furiously typing away trying to keep up with the deluge of questions. In fact, I am still going back and answering late questions right now. At first I was a little nervous about facing a bunch of trolls and kooks, as the Internet appears full of these days. But the questions were all quality and reflected a desire to actually learn something about the subject.

I am grateful to Jef for writing the book, telling the story of patients driven to find their own solutions to untreatable diseases. And I am extremely grateful to Reddit for giving us this opportunity to share a taste of the experience with others who may have never previously heard of ALS before today. And thank you again, Jef, for inviting me to help her tell the story.

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Neuraltus News!

Phase 2B Enrollment Open Now!

On Thursday, September 22, 2016, Neuraltus Pharmaceuticals announced the commencement of their long-anticipated Phase 2B for their lead candidate NP001. NP001 is a molecule that reverts macrophages (white blood cells) from an activated state where they hunt down and destroy pathogens and injured tissue to a calmer state where they nurture and protect other cells. I have blogged about NP001 extensively in the past. This trial follows up their Phase 2A trial which completed a few years ago. Unfortunately many of the participants in that trial are no longer with us, including my friends Rob Tison and Ben Harris with whom I launched the concurrent Oral Sodium Chlorite Project.

What It Is

This Phase 2B trial is to confirm the results of the post-hoc analysis of the responder class found in the Phase 2A. In that analysis, Neuraltus discovered that patients who were given the highest dose (2mg/kg body weight) and had elevated levels of pro-inflammatory proteins called IL-18 and C-reactive protein responded quite favorably to the drug. If this Phase 2B returns the expected results, NP001 would have a strong case for the same accelerated approval that FDA just granted for the Sarepta DMD drug eteplirsen. We could have the first new treatment since riluzole and the first truly effective one.

Sign Up Now!

I encourage all PALS to use the Clinical Trials tool on my website, provided by our friends at Antidote. It is very important that this trial is fully enrolled as soon as possible so that it is quickly completed and NP001 gets a shot at getting on the market. That is the best chance for it to get to ALL the PALS whose lives could be extended. We did it for the Phase 2A and can do it again for the Phase 2B.

This is a very exciting moment in the history of ALS.

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Stem Cells for Dummies

Stem Cells for Dummies is authored by Lawrence S.B. Goldstein, PhD. Dr. Goldstein also co-authored the legislation which created CIRM.

The book does, IMHO, a rather good job of presenting complex science in terms which laypeople can easily digest. It starts with a primer on biology as it applies to stem cells and a brief history of their discovery and initial uses. The differences between adult and embryonic cells is explored with frank discussion of the attributes and limitations. The role of these cells in the research and treatment of various diseases is discussed along with a review of the current state of the art (my previous post on stem cells deals with some cutting-edge techniques). There is a detailed section on the ethical and moral controversies surrounding this sensitive topic, and a section on common myths and misconceptions.

Stem Cells for Dummies is written from the scientist’s viewpoint but takes effort to present in a neutral tone. It is written for anyone who wants to understand stem cell technology without requiring a PhD. Rather than spend weeks cuddling with Google and sifting through the inevitable dreck, drop $10 and receive a great resource from a recognized expert in either dead-tree or electronic form.

[disclaimer: I linked to Amazon for convenience and because I use their Kindle for PC application. If you can, support your local bookstores.]

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Kindle for PC

Back in November of 2009, Amazon released its Kindle for PC software. The program is free and available for Windows 7, XP, and Vista. A future version for Mac is promised.

While I have never used a physical Kindle (holding anything but my breath is no longer an option for me), the software appears to recapitulate most of the function of the device. The most important part for me (and for all advanced-stage PALS) is that it behaves very well with my optically-controlled assisted communication system. I use the ERICA from ERT. ERT was recently purchased by Dynavox but the K4PC should still work on that platform as well as the Tobii.

Downloading and installing is very simple. Once installed you need to register the “device” to your Amazon account (like the physical Kindle each registered software counts as one of the 5 devices on which you are allowed to share your purchases). If you don’t have an Amazon account you will need to set one up (I recommend letting an assistant do the data entry here although I was able to do this myself). For those who already have a Kindle, you should see your previous purchases sync to the software. If this is your only device, new purchases from Amazon will appear within 30 seconds of purchase.

Each page has large, easy to read type and the size and spacing can be adjusted for comfort. To either side of the page are white arrows to turn the page. They only appear on mouse-over, and if you click even near them you will hit the target. They are spaced far enough away from the text that accidental page turn is almost impossible. If you close the application with a book open your place is saved automagically. Other bookmarks are easily set.

The software is considered beta at the time of writing this post but works very well for me. Updates are automatic but can be set to manual. For software not expressly written for handicapped users it satisfies some important requirements. I am very happy to be reading books again!