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Today I would like to begin answering this question based on my own personal experiences. I would also like to initiate dialog with people whose lives have been affected by these disorders and people who have actively searched for answers to this question.

I became a biophysicist because I wanted to define the magic of life with mathematical models. Finding treatments for diseases was not something I had ever given much serious thought to. Then, within a few years, several eye-opening events took place and changed my views on what was important in my work. Early on, I lost a young colleague to a heart condition. My colleague’s death was a devastating loss not only for me but for everyone who knew him. It was an even more devastating loss for his family, because he was the fourth of five brothers succumbing to the same heart ailment. I, however, was certain that modern medicine had done everything it could do to save my colleague’s life. After all, my colleague had three heart surgeries and several devices implanted. Furthermore, his father was a physician, and I was positive he had uncovered all medical treatments that could save his son’s life. A few years had gone by, and I hadn’t given much thought to my colleague’s heart condition. Then, as I was settling into a new position, preparing my lectures for medical students, I came across some astonishing information. One of the topics I was assigned to cover was channelopathies. Channelopathies are disorders caused by defects in the structure and function of different ion channels. The ion channels are signaling molecules in the cell membrane that allow neighboring cells to communicate with each other. As I was reviewing the scientific literature, I came across studies that had identified my colleague’s heart condition. Had the cardiologists who treated my colleague read the same studies, they would have known that some of the devices they implanted did not benefit my colleague, but rather that they contributed to his death. At this point, I realized that what I do and learn as a biophysicist can translate into effective treatments for some of the most devastating disorders. At the same time, I recognized the presence of the dangerous gap between scientific research and current medicine even when the two target the same medical condition. One cannot help but wonder how many lives are lost in this gap. One thing for sure, I constantly wondered about the toll this gap had on many human lives.

Therefore three years ago when we discovered a vast signaling network in the brain that controls motion and cognition, we went into overdrive to characterize this network. We established that current medications that slow the progression of Alzheimer’s disease work through this same network. Furthermore, we found ways to enhance the effects of such medications. Finally, we established that the progression of Parkinson’s disease and the escalation of L-DOPA induced dyskinesia are results of the deterioration of this brain network. However, when I tried to publish the results of our work and make this knowledge available to the entire scientific community, I was stopped by anonymous reviewers of our work. Scientific publishing is a difficult process – every scientist is well aware of this fact. My initial reaction was to provide all additional data requested by the reviewers in order to have our discovery published so that the floodgates of development of new treatments for Alzheimer’s and Parkinson’s diseases would open. Two years later, I realized that our critics would never be satisfied with our data because our work has nothing to do with the established theory of neurodegeneration and formation of amyloid plaques in the brain. In response, I formed Cognistrata Inc. (www.cognistrata.org) with the mission to translate our scientific discovery into new treatments for neurodegenerative disorders. I also decided to turn directly for financial help to the families whose lives are affected by Alzheimer’s disease and other neurodegenerative disorders.

In my next blog entry I will explain why no one was able to discover this brain network before we stumbled upon it. But first, I would like to initiate a dialog and hear directly from you. Does it matter to you who will develop effective treatments for Alzheimer’s disease?  Would you support a woman biophysicist in her quest to find such treatments? Does it matter to you that most of the work that enabled us to discover the brain network was done in the heart? Or you would rather support the road well-traveled and the $400 million a year money pit focused on amyloid plaques research? I would like to hear your voice and your thoughts publicly or privately (just press the Contact us button at www.cognistrata.org).

Thank you.

Tatyana Ivanova-Nikolova, Ph.D.

Principal Investigator and President of Cognistrata Inc.

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First, in response to the title of your blog, we do have treatments for Parkinson's Disease, it is the cure that we await.  Personally, I don't care if a 12-year old child prodigy discovers the cure.  Your second question:  would those of us with PD financially support unconventional research for treatments/cures, I'm skeptical.  It seems to me that one would need to build alliances with well-recognized organizations already established in this research. 

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Gardener, I agree 100%. In fact I did some basic research on the above listed website, and found it to be very generic, with no direct contact info. I dig further and found that the address for Cognistrata Inc. to be for a residential home. Also the above company has only one employee......... So yes.... am VERY skeptical indeed.........

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Speaking for myself, I have lost future earnings, receive a lower level of SS payments than I would have had I been able to work until retirement age, a husband and his income, my mobility and many other things to Parkinson's. I can barely afford the treatments I get through mainstream medicine, housing, food and transportation. I could not, even if I were inclined, donate to unconventional research. I donate my time and my body to research regularly. That is what I have to give, and I am grateful to be able to still do it. You will have to find you some billionaire Parkies to give you the money.  Most of us are not. As a Master's level social worker, I would never have gotten wealthy in terms of money.

 

You may have noticed that this forum is for support from those with PD and their caregivers to others struggling with the same issues. It is not ethical, per the NASW standards that governed my interactions with clients or potential clients, to ask those in need to support a pet project of mine. You are not only NOT offering support and encouragement; you are asking us to support you, then shaming us for participating in and supporting the very organizations that gave us the treatments we do have and this free support forum which you have blatantly violated.

 

Dianne

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also found that they have a total of two sources of funding...... 1) via direct donation through PayPal. and 2) through a crowd sourcing site called GoFundMe......

I'm feeling that COGNISTRATA INC. is another direct subsidy of "Fly-By-Night Industries"........... here today, and gone tomorrow (with any money they can get on their way out the door)...........just my opinion..............

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I would like to respond to several of the comments previously posted in response to my entry. I will start with the fact that before forming Cognistrata, I was a college professor trying to convince “well-recognized organizations” of the potential value of our discovery. For almost two decades, I investigated the language of a single molecule in the heart. This language led us to the discovery of a vast signaling network in the heart, and later on, in the brain. Our findings are based on tons of concrete data. When we tried to publish these data, the anonymous reviewers built a wall so that this knowledge would not reach the scientific community. As I indicated, for two years, we provided more and more data until the two manuscripts that told the story of our discovery exceeded all length limits of even the journals that publish even the largest scientific papers. We developed a method that allows for the testing of new medications against neurodegeneration to be completed in less than a week. In addition, this network allows for the identification of the major components of the brain that break down in various neurodegenerative disorders. Yet the well-recognized experts refuse to acknowledge the data. They didn't critique our work directly and constructively, but rather they wrote concealed comments to the editors of the journals we were trying to publish our work in, so that we hit dead ends every time. At that point, I recognized that the reviewers were afraid that if our work becomes public, they might lose their lucrative research funding. I was also offered to relinquish the authorship of the data to the chairman of the department in which I was working because he is a prominent scientist that can publish findings of that magnitude. I found this profoundly wrong, and for this reason, I formed Cognistrata Inc. and decided to turn to the people that are affected by neurodegenerative disorders and let them know that there is a simple, yet promising path to stop neurodegeneration.  Because this is a Parkinson’s forum, I would like to share with you that one of our studies that never saw the light of day delineates the mechanism of the L-dopa induced dyskinesia. For the past year, I pursued this research without any financial funding because the major research organizations refuse to acknowledge our work. For this reason, I am turning directly to the people that would benefit from this research. If you would like to contact me directly, you can send a message to cognistrata@gmail.com and I will personally address your questions.

Wishing you well.

Tatyana Ivanova-Nikolova, Ph.D. 

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It is curious that you are so interested in people with brain diseases. Is it because you think our brains are not working well enough to catch on to you?

 

Well, as you can see by the numerous highly intelligent responses you are wrong!

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I thought it funny that the picture of their modern "lab" on the website is really a picture of a contemporary residential home kitchen. (presumably where they spend countless hours researching what to cook for dinner...)

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If this indeed is ground breaking research, and your work is being shut out by the big boy corps, take it to the press. There has to be some Lois Lane out there just waiting for this scoop. Put your real name, face, and reputation where your mouth is & stand proud behind your work. Anything less than that isn't going to get you anywhere, except investigated.

If you are legitimate then bless you, but if not, you sadden me and shame on you.

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Part 2: The trap of artificial experimental systems.

 

Have you ever wondered why with all the research going on, there are no treatments that completely eradicate the effects of Alzheimer’s disease and the treatments for Parkinson’s disease is five decades old? This is part 2 of my attempt to answer this question.

 

To everyone who was unsettled by part 1 of my post, I would like to apologize. It is a fact that the pharmacological treatments of Parkinson’s disease have not changed in the last 50 years. The mission of Cognistrata Inc. is to change the statistics of Parkinson’s disease. I am not going to address any personal attacks because they are irrelevant to this mission. As far as my experience with ECU is concerned, I am currently working on a book dealing with that topic – in the book I will leave the explanation to the documents.

 

My post was an attempt to reach out to a group of people that I believe would be the biggest beneficiaries if we succeed in the development of new Parkinson’s treatments. I was not aware that many people have used this forum to target patients or their caregivers with illegitimate schemes. This is not my intention - I am trying to acquire funding for the rent of laboratory space in a biotech incubator in order to continue our research.

At the end of my first blog entry, I indicated that my next entry will address the question of why no one before us had discovered the signaling network in the brain that is involved in the control of motion and cognition.

 

The short answer is because of the type of experimental systems used to conduct research on neurodegenerative disorders.

 

THE INVISIBLE TRAP OF Xenopus OOCYTES & TUMOR CELL LINES

 

There is a standard path that most scientists follow when trying to understand a disease. They try to find a causative agent. This process resembles finding a needle in hay stack. For the neurodegenerative disorders, the search usually begins with a family or cluster of families affected by the same disorder generation after generation. Then the scientists comb through the genome of the affected family until they find a single gene or a group of genes responsible for the disease. Most often, even when a single gene is identified, only a small percentage of the people afflicted by the same disease carry the mutated (defective) gene. For example, a small percentage of Parkinson’s patients has a mutation in the LARK2 gene. After the gene had been identified, the scientists began long process of characterization of the protein encoded by this gene and its function in the cell. This characterization, however, takes place in artificial experimental systems. Most frequently, the gene is introduced either in the eggs of an African frog (the scientific term is Xenopus laevis oocytes) or in rapidly dividing tumor cell lines. These artificial systems can rapidly produce large amounts of the new protein and can accelerate the pace of research. This protein, however, is not incorporated in the correct context of the cell content because the frog eggs and tumor cell lines are wired for functions different from the functions of the cells in the brain and in the heart.    

 

When we first discovered the signaling network in the heart, we attempted to reproduce it in tumor cell lines and in Xenopus oocytes by introducing the gene that encodes for a major component of the network. Even when the critical component of the network was overproduced in the foreign cell environments, the signaling network was not forming. The individual components were present - these components, however, did not assemble into signaling network. The take-home message is that no scientific effort can discover something that is fundamentally lacking in the artificial experimental systems routinely used to study neurodegenerative disorders. 

 

THE RESPONSE OF A NETWORK IS MORE THAN THE SUM OF THE INDIVIDUAL RESPONSES.

 

Different cell types in the human body use the same building blocks to achieve very different functional outcomes. Yet, scientists most frequently focus on a single building block and ignore its connection to the cell environment.  For this reason, every year, hundreds of scientific papers are published promising the next breakthrough in treatment of different conditions only to fail the test of clinical trials.  In a recent interview, M. J. Fox elaborated that his foundation has funded research on more than a hundred different targets but new treatments have been notoriously difficult to discover. What everyone was overlooking was that anytime a signaling element is taken out of its normal environment, the properties of this element change. Therefore the method we developed is so different from what everybody else is doing and has enormous potential for discovery of new treatments and even cures for neurodegenerative disorders.  This method allows us to isolate the brain signaling network and to monitor the activity of each individual building block in real time, as well the live interactions between different components. Furthermore, the test of a candidate drug takes a week from start to finish. Imagine the possibilities for drug discovery if the efficiency of candidate drugs can be tested within a week instead of years.  This is what your support of Cognistrata Inc. can accomplish.

 

Tatyana Ivanova-Nikolova, Ph.D. 

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Again, We're not interested in a fly-by-night operation. run out of a residential home with a kitchen counter lab. IF you are legitimate, go source your funding from legitimate sources, NOT from the patients you claim to want to treat.

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Oh wait, I should give them the mailing address of my Ex, as well as the addresses of the five people I like the least...... and say that they're ready to invest thousands...........

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cognistrata;

 

you may be interested to read the article , here published under the nutritionist's ,Kathrynne Holden, forum: Who Dropped the Ball on L-dopa? A patient's Lament.

In my own circle, I know of far too many people who have been more harmed than helped by doctors/pharmaceuticals/ government policy (e.g. dietary recommendations and drugs like statins that end up being proved wrong).

There is a new charitable foundation started by world famous, filthy rich women, like Ariana Huffington, specifically to study the brain from a different perspective. I'll hunt up the name when I get time, and post it on your blog.

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