Tag Archives: soapbox

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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

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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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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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ALS-New-Drug-New-Scam? – Redux

So it looks like the entity behind “ALS New Drug” is back, this time with a new website host. The site has been changed so that every page begins with erroneous whining about how ALSUntangled supposedly ended some kind of “charitable funding”. First, that person, persons, or organization has no status as a charity in any country. Second, ALSUntangled has taken no stance on the subject whatsoever because the entity refuses to cooperate whatsoever by revealing any information about itself or the product it promotes.

Let me explain the facts of the situation:

Back in July of 2015 the “als-new-drug.com” domain was purchased by a man in Great Britain named Michael Richards. Apparently around September 2015, the website was put up. A [non-exhaustive] search of the Internet and PubMed reveals no Michael Richards from Essex, Great Britain, involved in neurology or ALS.

In April, 2016, the site was brought to my attention by another PALS. I read through the site and read a lot of claims backed up by absolutely no objective information in the form of links to studies involving the drug in question, no objective or clear information about what the drug actually is or how it works, and no identification of the inventor(s) or the entity promoting the drug. A deep Internet and PubMed search for RCH4 or the “scientific” name given revealed absolutely no hits (very unusual and highly improbable for a real drug that has supposedly been in development for many years). In fact, absolutely no objective information exists about this drug except for the claims made on the website.

After failing to find any corroborating information, my Internet domain information lookup results, and my decades of professional experience identifying Internet scams, I made the initial assessment published on my blog in the post titled “ALS New Drug New Scam?”. Because this had been brought to my attention by another PALS who was considering taking this “treatment” and because other patients were apparently already using it, I felt it was urgent to publish a warning that something was not right about this. I have been publishing this blog for exactly this reason since 2009 and I am known for my understanding of the neuroscience and pharmacology of ALS. That’s one of the reasons I was invited to join the ALSUntangled Review Group.

After I published my initial assessment – based on all the available objective information – I contacted Dr. Bedlack to ask if he knew anything about the subject. He informed me that it was on the list of Open Reviews (I don’t keep the list updated in my memory). Because it’s quite a long list and Dr. Bedlack is busy running a major ALS clinic, he asked if I would be interested in taking the lead in gathering information for this project and writing an initial draft report (something I have previously done multiple times for ALSUntangled). Of course, I agreed to assist. There is no title of “Lead Investigator” for ALSUntangled but I used that in email and forum postings to communicate with others because it’s a more succinct and convenient identification of my association with ALSUntangled. I then sent a request for information to the entity promoting RCH4 at the AOL email address given as contact on the website and began asking for patient experience and information on various forums dedicated to ALS.

The questions I sent to the contact email was the standard set sent to every promoter of an alternative treatment option, plus a few of my own customized to this case which were relevant to the investigation. The questions are:

  1. What exactly is this drug and how did you discover it?
  2. How does it work?
  3. What is published on the mechanism?
  4. What pre-clinical ALS data are there?
  5. Are these pre-clinical ALS data published?
  6. How many patients with ALS have taken this?
  7. What are you measuring in patients with ALS that take this?
  8. What happened to those measurements?
  9. Over what period of time and how often are measurements made?
  10. Has anyone had any side effects from this drug?
  11. What percentage of people who take it have any side effects?
  12. What are the most common side effects?
  13. What are the most serious side effects and how often did these happen?
  14. How much do you charge patients for this drug?

Additionally:

  1. If not why not and how are you capitalized?
  2. Will you identify the members of your group so that their qualifications can be examined?

These are standard questions that ALSUntangled asks of EVERY promoter of an alternative treatment option. They are intended to gather relevant data so that a scientific evaluation of the substance can be made, and I included the financial question so patients would have some information about the possibility of long-term access. The promoter is always free to not answer any particular question. The entity behind RCH4 reacted instead with hostility – as if the questions were attacks on their very character. Moreover, apparently they have patients sign nondisclosure agreements before any distribution of the drug begins so that automatically increases the difficulty of discovering the truth of the subject. These two facts, along with the lack of any objective information made available on their site or to prospective clients inquiring about it, only reinforces my personal initial assessment that something is very wrong with this entire program.

The entity says that ALSUntangled and/or I made an allegation of some criminality on their part. In fact, ALSUntangled has made no statement of any kind about RCH4 and I merely opined based on all the [still paucity of] currently-available information and my many years of professional training and experience. The entity says I have no medical credentials. This is true, but neither does it. I do have years of dedicated learning and am recognized as an expert on the subject of ALS and treatment options for it. The entity says I have no experience with drug development. This is untrue, as I have experience both in aiding others’ programs and in developing my own via my research organization, SciOpen Research Group. I also have quite a bit of knowledge of the development process from my experience with and founding of WideTrial, my experience with and founding of Hope NOW for ALS (both organizations deal with improving clinical trials and involve dealing with regulatory authorities and pharmaceutical companies). I also have nearly a decade of experience in advocacy and awareness in the ALS space. My record is impeccable and very publicly transparent. I invite the entity promoting RCH4 to exhibit the same public transparency.

The entity says that my blog post warning patients away from whatever RCH4 is somehow cost them their “charitable funding”. I was never contacted by anyone representing themselves as being affiliated with the RCH4 entity. While I realize that I have a reputation in the ALS Community of being knowledgeable, I highly doubt any funding organization would base its decisions on my personal opinion alone. But if for some reason it did, there was obviously very little faith in the RCH4 entity to begin with.

To recap:

  • In July 2015, a domain called “als-new-drug.com” was created and shortly thereafter the website promoting RCH4 was put up on the same URL;
  • In April of 2016, I was informed about it and did a personal search on RCH4 and the entity behind it;
  • After failing to find any objective information verifying any of the claims on the website or the identity of the entity and/or supporting scientific staff (a situation that persists to this moment), I posted my findings on my personal blog;
  • I then communicated with Dr. Bedlack about RCH4 where he asked me to gather information for an ALSUntangled review, including sending the standard questions to the entity promoting RCH4 and asking PALS claiming to be taking RCH4 about their experiences, an activity I began immediately;
  • I very quickly learned that PALS were required to execute nondisclosure agreements with the prior to being provided RCH4;
  • I received a response from the entity via comment to my blog post full of overly-dramatic wounded pride and a pledge to not cooperate with the ALSUntangled investigation;
  • Patients currently using RCH4 were warned by the entity to not cooperate with the ALSUntangled investigation;
  • In an effort to smooth any hurt feelings, I recused myself from the investigation – to no avail;
  • Shortly thereafter, the website disappeared and the entity apparently began informing patients that continued supply was in jeopardy;
  • I received hateful comments from a few patients – including death threats – demanding that I take down my post (as if that would suddenly change anything?);
  • The website returned, blaming ALSUntangled and/or me for ruining a “charitable treatment program”.

I made my initial personal assessment based on my many years of professional experience and more recent scientific knowledge, and upon previous public lectures by Dr. Bedlack on how to spot treatment scams. I was not acting on behalf of ALSUntangled but entirely on my own. Afterward, I was asked to gather information for their own review – information which would have been reviewed and discussed before a report is published by the entire group which includes many well-known MDs and PhDs involved in ALS research and treatment. The amount of available objective information has not increased one bit since my initial assessment. I would love to be proven wrong but that would require objective and verifiable information. The RCH4 entity is not only not helping, they are actively resisting all efforts at learning any facts about RCH4. Facts are not just unsubstantiated claims on a website. Facts are independently verifiable objective information. All scientists and doctors, retired or not, understand that they have a duty to first provide scientific rationale and preclinical data about their drug along with a clear description of its chemical makeup before providing it to patients. That is a basic fact about drug development which apparently I know and the RCH4 entity does not.

If the RCH4 entity wants my personal assessment and warning to PALS taken down, they can very easily provide me and/or ALSUntangled with the answers to the questions sent, and allow patients to communicate about their experiences. Until then, my personal blog post will stay up as a warning to PALS to not inject into their bodies an anonymous substance sent by an anonymous source. As stated earlier, I would love to be proven wrong, and indeed welcome it. However, everything so far has proven me right.

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ALS-New-Drug: New-Scam?

UPDATE – June 29, 2016: Apparently the site is back and whining that ALS Untangled is somehow responsible for them losing “charitable funding”. ALS Untangled had nothing to do with RCH4 except having asked me to take the lead in gathering information about it from the provider and from patients. My initial assessment was indeed made quickly but was based on all the information currently available, and was made based on my decades of expert professional experience in identifying Internet scams. There is currently zero scientific evidence for any of the claims made of that website and the provider has been given multiple ongoing opportunities to back up the claims with objective evidence. I never made any claim of “criminality” – rather I feel that something is not right and that PALS should avoid injecting themselves with a completely anonymous substance.

UPDATE – May 12, 2016: Apparently the domain owner, Michael Richards, pulled the site and folded up his tent. No idea what he told “his patients”. I have absolutely no guilt over this. If all it took was one person questioning the veracity of that RCH4 whateveritwas to make him pull up stakes, then there was nothing worth putting hope into in the first place.

UPDATE: If anyone has attempted to obtain this drug and have retained emails or postal letters, please contact me so I can investigate further.

BREAKING NEWS! (April 14, 2016)

I was just alerted to a website advertising a new treatment for ALS (http://als-new-drug.com – text provided for reference but no link for reader safety). The site purports to represent a “group of retired scientists and doctors” in Europe who “discovered a previously unknown protein … which promotes ALS” and “designed a drug which safely stops production of the problem protein”. The site provides no references for the protein and a web search of the name given provides no relevant returns. The same goes for the given name of the drug. Neither is any information given about exactly who comprises this group so that their qualifications may be examined.

Domain information is:
Domain Name: ALS-NEW-DRUG.COM
Registrar WHOIS Server: whois.publicdomainregistry.com
Registrar URL: Updated> Date: 2015-09-04T02:32:35Z
Creation Date: 2015-07-05T10:28:14Z
Registrar Registration Expiration Date: 2016-07-05T10:28:14Z
Registrar: PDR Ltd. d/b/a PublicDomainRegistry.com
Registrant Name: Michael Richards
Registrant Organization: Not Applicable
Registrant Street: 56, Amanda Close
Registrant City: Chigwell
Registrant State/Province: Essex
Registrant Postal Code: IG7 5JG
Registrant Country: GB
Registrant Phone: +7.981150350
Registrant Email: privacy@wzukltd.com

This raises a number of red flags and identifies it as a likely scam:

  1. There’s no identification of the “scientists” behind this
  2. There are no links to publications about the protein
  3. There are no links to publications about this new drug.
  4. The website is cheap, poorly-designed, and unprofessional.
  5. The website is registered to an individual in Great Britain with an obscured contact email address.
  6. The website is clearly designed to create anxiety in the reader about “missing out”, thereby making the reader immediately more amenable to the presumably eventual sales pitch for the “immensely expensive” drug.

Without any evidence of efficacy, safety, or even the ingredients of this substance, I would very very strongly urge everyone to ignore this website completely.