All posts by ENV

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Cyborg Is As Cyborg Does – Reply All Interview

World’s First Fully-Functional Cyborg

Reply All Cyborg

I am the world’s first fully-functional cyborg! Need proof? My part in this Reply All podcast starts at 16:35.

This interview took place over about 3 weeks including one live telephone call and approximately 40 questions over email to which I replied both with text and individual MP3 files of the audio of my computer speaking each answer. It was a rather interesting experience and one that would certainly come in handy for any future interviews. Sruthi Pinnamaneni and Rick Kwan did a great job of stitching all of the questions and answers together to make a single coherent interview.

My desire was to demonstrate that life goes on after diagnosis and that there is still PLENTY that someone can still do despite full paralysis and being dependent on a ventilator. Hopefully other more newly-diagnosed PALS listening to the podcast can take a little inspiration to keep living and contributing your individual wonderful gifts to the world. Together, our voices are amplified and we can create the change we want to happen in the world.

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Reply All – ALS Reversals

Reply All Podcast – The Reversal

ReplyAll-Podcast-Logo

As many of you may know, Dr. Richard Bedlack has been investigating a very rare phenomenon known as “ALS Reversal” where the normally inevitably fatal disease can stop progressing and even where the patient recovers slightly or nearly fully. Over the past few months Dr. Bedlack has been interviewed for a podcast called “Reply All” (I know the timing because I was also being interviewed for supporting material). The podcast is worth a listen, and you can get read the transcript at the Reply All website.

This is more good exposure for ALS awareness. Thanks to Dr. Bedlack and to Reply All for a great story.

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Quora Top Writer Of 2017!

WOW! – Quora Top Writer Of 2017!

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I just received an email today notifying me that I have been named a Quora Top Writer Of 2017! My contributions are tightly focused in the topic of Amyotrophic Lateral Sclerosis (which I created on Quora) with some attention in the broader topic of Neurodegenerative Diseases, along with a few answers in the topics Science, Physicists, and Stephen Hawking (to give a long-term patient’s perspective on some questions asked about the Professor, including one asking how he fathered children where my answer has 1.4 million views and over 20,000 up-votes – the Quora equivalent of a Like). I have to thank my friend Laura Copeland for introducing me to and getting me involved at Quora. Laura and I met in 2011 when she interviewed me for a story in my local newspaper. She and I remained friends ever since.

Quora is probably the best place to go for answers to questions about anything from science to global social issues and politics to personal hobby interest (maybe I should start a Surfing topic..?). It’s a highly erudite place, especially for a social media site and has astonishingly remained so for many years. Quora is a place where trolls are not tolerated and from which is almost totally free.

I am quite flattered to receive this distinction and am happy that my contributions have been deemed useful for the many people who have read my answers and those who have engaged in enlightening discussions after. It’s been a wonderful experience so far, where I have been able to definitely expand global public awareness of ALS/MND is a positive and engaging way. I am thankful for the opportunity and for the response. I look forward to many more years of engagement and enlightenment.

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Top 10 Quora Writer

Top 10 Most Viewed Writer On Quora

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Wow! I just stumbled across my full Writer Rankings on Quora (http://www.quora.com). Based on number of views in the last 30 days, I am a “Top 10 Most Viewed Writer” in the following Categories:

  1. Stephen Hawking – #1 with 96,450, #2 has 4,764;
  2. Amyotrophic Lateral Sclerosis – #1 with 86,333, #2 has 194;
  3. Scientists – #2 with 83,523, #1 has 104,262;
  4. Physicists – #2 with 83,290, #1 has 359,824;
  5. Neurological Diseases and Disorders – #3 with 444, #1 has 1,222;
  6. Science – #10 with 83,114, #1 has 234,073.

Also:

  • Neurodegenerative Diseases – #23;
  • Neurology – #31;
  • Charities – #39.

This is very humbling. It’s also quite gratifying to find out that my attempts to share what little knowledge I have gained over the years are deemed useful by others. That’s all I want to do by providing answers on Quora.

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Reddit AMA Guest Appearance

Reddit Tag-Along

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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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Guest Blog – ALS Finding a Cure

Watch These Straight-Talk Videos from ALS Finding a Cure

I’ve invited my friend Dr. Merit Cudkowicz at ALS Finding a Cure to share some important news about what they are doing to help ALS patients and their families learn all they can about the disease. Please read and share.

Every 90 minutes or so, someone new is diagnosed with ALS.

A new patient and his or her loved ones are overwhelmed by a whirlwind of emotions. They are shocked, confused and desperate for information.

So many questions … What exactly is happening to me? What’s next? How long will I live? Will I be able to drive? Or shower? Or go to the bathroom by myself? What happens when I can’t do these things anymore?

At this critical time, patients and caregivers need plain, simple, factual information from experts who care.

That’s why ALS Finding a Cure has created a series of videos to help ALS patients and their loved ones better understand the disease and the resources and support that will be needed as it progresses.

You get facts and insights from the people who know best — individuals living with ALS, their spouses, healthcare providers and professionals. Each of the eight videos brings an honest and straightforward perspective on the impact this disease has on the lives of those touched by it.

We have strived to cover the topics that a patient, caregiver or loved is most concerned or curious about:

  • Overview describes, in layman’s terms, exactly what ALS is and what it will do
  • Resources explains the information, equipment and support networks available to help manage the disease
  • Lean In encourages individuals to realistically prepare for, embrace and take ownership of ALS
  • Relationships provides guidance on maneuvering through the disease and the importance of a journey-long support system
  • And four other videos – Nutrition, Mobility, Hygiene and Breathing & Communication – offer straight talk and on each of those vitally important topics

The video series is an extension of the primary purpose of ALS Finding a Cure, which is to find and fill in the critical gaps in ALS science so that researchers can – one day soon, we hope — develop treatments for and a cure to this disease.

But we are also committed to empowering patients and their loved ones, right now, to be proactive about understanding and managing ALS. These videos are intended to be a resource so that patients and others can make informed decisions throughout their journey.

“Lean in” is more than just the topic of one of the videos; it is the overarching theme for this series. As Eric Valor’s inspiring life makes evident, being proactive is central to understanding, coping with and owning ALS.

We hope you will find these videos to be an effective resource for anyone impacted by ALS.

Dr. Merit Cudkowicz
Chief of the Neurology Department at Mass General
Chief Medical Officer, ALS Finding a Cure

www.alsfindingacure.org

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New Facebook Scam

!!URGENT SCAM WARNING!!

(no, this not about RCH4…)

Do NOT accept any Facebook friend requests from a “Rodney Frisard”. I did, and he immediately started a conversation asking if I had “heard the good news”. I said that I had “been there done that with the whole Jesus thing” (note to others: Please don’t evangelise to me as I really have already been there and done that and am not interested in religion outside of sociopolitical discussions). He responded by telling me some story about how the UN was giving “us” money to combat poverty, and he “noticed my name on the list” when he was supposedly signing his documents for $150,000. Obviously this is a total scam along the lines of a 419 or lottery email scam. When I said I would not be giving my social security or bank information, he deleted the conversation.

Do not give out any personal information to this or any other new “friend”. I don’t know if this is limited to Facebook, but remain vigilant. Beware.

Transcript below:

“Conversation started Saturday
Rodney Frisard: 10/1, 8:57pm
hello,how are you doing?

Eric Valor: 10/1, 8:58pm
all things considered, quite well.

Rodney Frisard: 10/1, 8:59pm
glad to hear from you,hope you heard the good news?

Eric Valor: 10/1, 9:00pm
not to be rude but been there done that with the jesus thing.

Rodney Frisard: 10/1, 9:01pm
About the money grant offer?

Eric Valor: 10/1, 9:04pm
how much to whom from who for what

Rodney Frisard: 10/1, 9:05pm
the united nations are helping us with some grant money this days,they said the money is to help eradicate poverty and maintain a good standard of living, i got $150,000 from them and i also saw your name on their winning list when i was signing my document with them,hope they have contacted you as well?

Rodney Frisard: 10/1, 9:06pm
?

Eric Valor: 10/1, 9:10pm
and a nigerian prince wants to share $40m with me…

Rodney Frisard: 10/1, 9:10pm
who?

Eric Valor: 10/1, 9:12pm
I have been around the internet since before it was the internet. I have seen all these scams before.

Rodney Frisard: 10/1, 9:14pm
scam?

Eric Valor: 10/1, 9:18pm
all you need is my social security and bank account information
not gonna happen.
anything more before I block you, report your profile, and make a very public blog post with international distribution?

**You cannot reply to this conversation.**

[at this point the person deleted the conversation and ran away]

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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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Guest Blog: Me!

SRG Research News – First A Little Background

As most of you know, I started SciOpen Research Group as a way for me to be able to fire actual bullets in the battle against ALS (well, actually metaphorical, but you get the idea). Our first project failed to extend life in the classic ALS mouse model so we retained the money raised to conduct the planned second part of that experiment. We had another project already in the research pipeline waiting to take the next step in development. For two years SRG was working on creating a novel molecule which would treat the desired pathway without becoming toxic like the reference molecule does at therapeutic doses. Suddenly we had the opportunity to collaborate with researchers already investigating the same pathway, albeit in different conditions (watch the video announcement), with their own library of candidate molecules.

Our collaboration’s first phase is to create a novel transgenic mouse species which represents a 100% drug efficacy in order to be a proof of concept. The project should run through the last half of 2016. As you will see below, a study was recently published which shows that SRG is definitely onto something. Our target protein is significantly elevated in human patients, and that targeting it brings positive results. The study is great indirect support of our project’s goal.

And now, the guest blog featuring myself!

Good News For Our Latest Project!

A recent report published in Science magazine strongly suggests that SciOpen Research Group is onto something with its currently ongoing study of necroptosis in ALS. Necroptosis is a “cousin” of apoptosis. In contrast to apoptosis, which happens regularly in the body, necroptosis is a form of programmed cell death which happens under inflammatory conditions and in which the components of the dead cell spill into the extracellular space. The spilling of the cellular components trigger a response in which immune cells are recruited to the area. Necroptosis is known to be a driver of both genetic ALS and sporadic ALS.

The subject study is not a direct support, in that it was looking at how the optineurin protein contributes to ALS. However, the results showed significant increase of the MLKL protein in human patients and that elimination of the RIPK3 protein or inhibition of RIPK1 had modest but nevertheless positive effects on survival of the SOD1 mice (along with positive biological evidence). This suggests that SRG is on the right track with its MLKL study. We believe that acting on MLKL will have a stronger effect without disrupting other cellular functions which depend on RIPK3 and/or RIPK31 (MLKL is involved only in necroptosis).

This study is YOUR study. It would not be position without your support. SciOpen Research Group is the world’s first fully functional “guerilla biotech”. We function only with your support and study pathways other research organizations either miss or ignore. And we can do it for much less because we are purely volunteer and have no overhead. 100% of your donations go directly to research. To support us you can make a tax-deductible donation (USA residents only) by going to our Donations page, purchase some SRG Gear, and/or go shopping on Amazon Smile and name SciOpen Research Group as your charity of choice (we are a registered and approved nonprofit under IRS 501c3). We work on ALS for you, the ALS Community, because we are part of the ALS Community. Help us continue our novel research into eradicating ALS.

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Guest Blog: Me!

Good News For Our Latest Project!

A recent report published in Science magazine strongly suggests that SciOpen Research Group is onto something with its currently ongoing study of necroptosis in ALS. Necroptosis is a “cousin” of apoptosis. In contrast to apoptosis, which happens regularly in the body, necroptosis is a form of programmed cell death which happens under inflammatory conditions and in which the components of the dead cell spill into the extracellular space. The spilling of the cellular components trigger a response in which immune cells are recruited to the area. Necroptosis is known to be a driver of both genetic ALS and sporadic ALS.

The subject study is not a direct support, in that it was looking at how the optineurin protein contributes to ALS. However, the results showed significant increase of the MLKL protein in human patients and that elimination of the RIPK3 protein or inhibition of RIPK1 had modest but nevertheless positive effects on survival of the SOD1 mice (along with positive biological evidence). This suggests that SRG is on the right track with its MLKL study. We believe that acting on MLKL will have a stronger effect without disrupting other cellular functions which depend on RIPK3 and/or RIPK31 (MLKL is involved only in necroptosis).

This study is YOUR study. It would not be position without your support. SciOpen Research Group is the world’s first fully functional “guerilla biotech”. We function only with your support and study pathways other research organizations either miss or ignore. And we can do it for much less because we are purely volunteer and have no overhead. 100% of your donations go directly to research. To support us you can make a tax-deductible donation (USA residents only) by going to our Donations page, purchase some SRG Gear, and/or go shopping on Amazon Smile and name SciOpen Research Group as your charity of choice (we are a registered and approved nonprofit under IRS 501c3). We work on ALS for you, the ALS Community, because we are part of the ALS Community. Help us continue our novel research into eradicating ALS.