"Reflections of a Scientist with Parkinson's disease": An Invited Article in the Newsletter of the European Network on Nrf2

[wriga]

Prof. Antonio Cuadrado, a world leading neuroscientist from Madrid, is Chairman of the European COST Action CA20121 entitled “Bench to bedside transition for pharmacological regulation of NRF2 in non-communicable diseases (NCDs)." This is a Network of the world's leading researchers, specialists in the Nrf2 transcription pathway, funded by the European Commission and dedicated to exploring the science and medical applications involving activating or de-activating the transcription factor Nrf2 to combat NCDs. Among these NCDs, four neurodegenerative diseases have been identified as having a common mechanism involving Nrf2. These are Parkinson's disease, Alzheimer's disease, Huntingdon's disease and Amyotrophic Lateral Sclerosis (motor neuron disease). Sulforaphane is an isothiocyanate that can be made from broccoli seeds and is one of the most potent and most studied natural activators of Nrf2, although all isothiocyanates found in the Brassicaceae family (cruciferous vegetables), activate Nrf2 to some degree. For more than 30 months I have been developing and testing an infusion containing isothiocyanates including sulforaphane to activate Nrf2 in order to slow or reverse the progression of my own Parkinson's disease. This research led me to write a presentation article (hopefully easier to understand than a scientific paper and more fun to read), which I distributed in early July to a few leading researchers in the field in. This document outlines why I chose this line of research, how the infusion has affected my Parkinson's disease and my analysis of where I believe this therapy breaks the chain of events causing Parkinson's disease progression. It also brings to light the remarkable achievements of the fundamental research community to identify and validate the potential of the Nrf2 pathway as a target to slow or reverse neurodegenerative diseases and the utter (and most-likely deliberate) failure of the Pharmaceutical industry to recognise this pathway. Following from this, I was contacted by Prof Cuadrado who asked my permission to publish "Reflections of a Scientist with Parkinson's disease" as an "Invited Article" in his Newsletter on Nrf2 circulated to all the scientists signed up to “Bench to bedside transition for pharmacological regulation of NRF2 in non-communicable diseases (NCDs)" .

His introduction to the article is given below.

For those of you interested in the science, I would encourage you to read more about this initiative by consulting the earlier Newsletters as well as the articles on the website itself : benbedphar.org/about-benbed...

Invited article

In January 2020, I was approached by Dr. Albert Wright. He is a retired British researcher based in Grenoble, France, that had been suffering from with Parkinson’s disease (PD) for more than 2 years at that time. He was looking for ways to slow or reverse his disease and, based on the available literature on the NRF2 activator sulforaphane and PD, he started to take an infusion of broccoli seeds, rich in glucosinolates and isothiocyanates. A careful self-analysis of his disease led him to conclude that the sulforaphane-rich tea improved several PD symptoms. Unfortunately, he could not engage clinicians in the analysis of his disease progression and, due to lack of a highly controlled trial, based in school pharmacology and medicine, our letter correspondence cooled down. Recently, Albert contacted me again, as well as Dr. Albena Dinkova-Kostova, world expert in NRF2-related pharmacology, and Dr. Jed Fahey, expert in extraction of sulforaphane from Cruciferous vegetables at John Hopkins University. In these years he had organized a support group with several PD patients that were also taking a sulforaphane-rich infusion. While a carefully controlled trial is still necessary, Albert’s essay depicts a crucial problem in the NRF2 field, which is that most NRF2 activators are of natural origin and difficult to be protected with strong patents by biopharmaceutical companies. This fact represents a significant restrain in development of NRF2-related therapeutics in diseases such as PD. In other words, pharmacological research is not always focused on patients but on investors.

Antonio Cuadrado

Chair of COST Action 20121, BenBedPhar

Autonomous University of Madrid

The link below takes you to the newsletter but not directly to the introduction to the article. On a PC, you can see the contents page and and can click on the entry labelled INVITED ARTICLE. Otherwise, scroll down the pages to find it.

benbedphar.org/issue-3-july...

A direct link to "Reflections ...." can also be found here ...

patientresearcher.com/2022/...

You will no doubt notice that my analysis and the final comment in Prof Cuadrado's introduction are in perfect agreement with the conclusions of the recent book entitled "Sickening: How Big Pharma Broke American Health Care and How We Can Repair It" written by John Abramson.

I posted about this on HU last month:

healthunlocked.com/cure-par...

In short, pharmacological research has focused on generating the maximum return for investors rather than finding a cure for Parkinson's disease.

[Rupa88]

AgreeUnfortunately all the foundations like MJFF are under supervision of big pharma and they even control the government funds.

Such a corrupted world

[Bolt_Upright]

Thank you so much Albert for all you do and all you have done!

[wriga]

Thank you for your likes and kind words. I would however like to make it clear that in the real world we need much more than likes and kind words. Until early 2022, I was alone working on this project, except for help and encouragement on the scientific side from Profs Albena Dinkova-Kostova and Jed Fahey. Doing the research, planning and carrying out the experiments, analysing the data, writing to scientists and PwPs, writing the articles, setting up the website, etc. has been more than a full time job for 4 years for someone in good health, for someone with PD it has been an enormous challenge, but it has been worth it.

In addition to the research effort, I have tried to reach out to PwPs, real people with real problems.

Since early 2022, Frank Mundo has stepped in to help with organisational issues in response to my appeal for help to give me more time on the research side. His help gave me the time to write "Reflections of a scientist with Parkinson's disease ".

I consider that the invitation from Prof Antonio Cuadrado to include "Reflections.." without requesting the slightest modification, in his cutting edge Nrf2 newsletter is a huge endorsement of my analysis of the causes of PD and the immoral attitude of the Pharmaceutical industry to keep PwPs suffering because that's what keeps the profits up. But in the real world controlled by Big Pharma, this revelation won't change anything.

On the practical side, we have now declared the Broccoli Seed Tea Research Group to be operational in preparation for the next round of testing in the UK and USA whilst trying to standardize the broccoli seed source and the preparation protocol for making the tea. We now have the exact same high quality seeds available in several countries and will be building up stocks to ensure adequate supplies for several years of testing anywhere in the world. This did not happen by accident. It took hard work, organisation, perseverance and personal expense.

Frank is already overwhelmed with demand. We don't yet have a coordinator for the UK, but we will go ahead anyway because people are suffering.

You can find the information here.

patientresearcher.com/2022/...

This announcement will create a mountain of work. We won't be able to do it all even with your "likes" and kind words.

What we now need is support.

Real support in the form of serious, competent and reliable help. This comes via offers to take on responsibilities, to do jobs that we don't have the time to do, to help answer PwPs questions, and communicate with a whole range of people we will need to convince if we are to change things.

So far all this has been done without any outside funding. This will have to change.

We cannot develop without substantial funding.

Antonio Cuadrado's words convince me that the scientific base for using sulforaphane to treat Parkinson's disease is solid.

The medical profession is either collectively wrong in its analysis or is corrupt, or both. We have to get this message out.

With your help we may be able to change that. Without it PD will continue to make people's lives hell.

[pjokeefe in reply to wriga]

I hope this link works. It is from Dr Rhonda Patrick from foundmyfitness.com on the subject of sulphoraphane. Sulforaphane and Its Effects on Cancer, Mortality, Aging, Brain and Behavior, Heart Disease & More

youtu.be/zz4YVJ4aRfg(Not working as expected?)

[MBAnderson]

Thanks Albert.

[cmc2]

Thank you Albert for all that you have done and continue to do for us. I will support these efforts as much as I can. Chrissy

[wriga in reply to cmc2]

Thanks Chrissy,Sorry for my rant, but sometimes it can be useful to let of a bit of steam. Talking to Frank, it is becoming clear that we need a coordinator for each country very soon. We are now looking into the planning of future experimental runs and capping the numbers per run or per country.

I'll be in touch.

Albert

[HekateMoon]

Grateful...very grateful for your work. 🙏 Its truly sickening what they are doing an very scary to be at their mercy.🤢

[Sandmanliz]

Can we get the tea?

[HekateMoon]

There is a group of which Bolt_upright and MBanderon are part that have been learning to make it. My understanding is that organic broccoli seeds are used to make sprouts and these are high in sulpharoprene. I need to locate the thread...im waiting for seeds to be delivered and will follow up...im a bit techno-clumsy so right now dont know very well how to find it but im sure they'll find it for us! Bolt?? Marc? Where and how do we follo up? Thank u guys!

[wriga in reply to HekateMoon]

This is the link to the Group. It's called the Broccoli Seed Tea Research Group.

It is part of a website where you will be able to learn more about Parkinson's disease than any other site if you are willing to read the articles and try to understand what is going on in a Parkinson's brain.

It is not a free ride to get the broccoli seed tea. The tea is made using a specific protocol which we are still improving and is made from specially bred broccoli seeds which are not commercially available. This protocol is regularly updated and, like the seeds is reserved for members of the group to make the tea for specific research activities. A program of self-experimentation is currently planned to start in mid September. Inscriptions for this program will close in mid August. This will be the first self-experimentation run using these special seeds and has been in preparation for over a year. The number of participants is strictly limited and is reserved for people already members of the Group, some for more than 3 years.

Depending on the outcome of this program, the results of which will be made available to all regular group members, a second program is planned to begin in mid January 2023..

The link is here.

patientresearcher.com/2022/...

[Schofield81]

If you can’t get on the trial with the specialist seeds is there any point trying with seeds available commercially? If yes what seeds are likely to be best? Is Broccoli seed tea different from the preparations suggested by dr Rhonda Patrick?

[wriga in reply to Schofield81]

These are not trials, we don't have the authorisation to do that. We are doing research, trying to learn more about SFN by self-experimentation. This is only possible for people who know what they are doing. That means studying the science, understanding what happens when you ingest sulforaphane. How this may or may not affect PD. What adverse effects can happen when you ingest the tea, short-term and long -term. Understanding what happens in the different processes involved in making the tea. All this takes effort and time. You don't get this understanding in a few days. You don't get the same results with ordinary broccoli seeds.

The tea is not the same as Rhonda Patrick's. It is optimised and calibrated.

Even if you don't start testing immediately, regular members get to know the collective results of the other testers after the session is complete. This is all discussed in emails and Zoom meetings. Once you have understood that, you may be qualified for the next round.

Besides all that we are trying to set up testing to compare the efficacy and adverse effects of ordinary seeds to the high quality seeds. This will, we hope enable people to be able to use commercial seeds in the future.

[Schofield81 in reply to wriga]

Thank you for you reply. I’m simply trying to do anything I can to feel better as my non motor symptoms are particularly bad. Happy this patient led research is going on and I praise you for the work. As as 41 year old recently diagnosed with Parkinson’s disease I’m just desperate to get involved and try something that addresses what I feel is the cause of my illness. Have been reading through the news letters on the site and so much of these theories chime with my own personal experience.

[wriga in reply to Schofield81]

I have just added more text to the post above.

[grower]

So you're not using "ordinary broccoli seeds" to make this infusion. GE seeds then?

[wriga in reply to grower]

The seeds are not genetically modified, just traditionally developed by cross breeding with a wild Brassica variety that is rich in glucoraphanin but has a very poor yield of seeds. The results is a broccoli plant that is not a good vegetable, but makes good seeds.

[Zella23]

Morning Albert, we ve been away in ‘Gods country’ for a week, a seriously relaxing holiday which we both needed.We’re so grateful for all your advice, help and encouragement, friendship and your unending amount of expertise, which you are willing to share.

We re wiling to help in any way we can Albert, not sure we have Franks expertise but maybe a group of us is the way forward.

[wriga in reply to Zella23]

Thanks Zella,I don't doubt that you already have or can learn the skills to get the show running. Chrissy has also offered to help. I think it will be a good idea to be a team of 2.

[Zella23 in reply to wriga]

Excellent idea Albert! John would be willing to give his input too.!