Neuralzeta - A new treatment for ALS /MND
Welcome
This website is maintained by PALS (People with ALS/MND) who are currently taking Neuralzeta. We have no connection with the suppliers apart from receiving the drug from them.
We look to help educate those interested in finding out more about Neuralzeta with this advocacy site. These are just a snapshot of users on Neuralzeta who have volunteered to put up their stories. We respect the privacy of people using Neuralzeta and not everyone wants to be in the public eye on here. If you are taking Neuralzeta and have a story to contribute, contact us using the contact us form below.
Neuralzeta was formally known as RCH4 before being patented.
Chart Below (supplied by Neuralzeta Charity) : effectively 115 years of accumulated patient treatment
More than 10,000 doses supplied free by a charity on a first come first served basis
Due to the cost, the charity is unable to get the FDA to review it for approval
There is a YouTube video evaluating all the ALS / MND drugs at: https://www.youtube.com/watch?v=IrYbA52GkgM
This drug works very well for us and you will find that Neuralzeta users are very passionate about the drug.
Neuralzeta has now many decades of efficacy data under its belt, but it still struggles to get any backing from any sectors, to take it forward to approval and ultimately be made available for all ALS sufferers at cost price.
What rubs salt in the wounds is that fact that there seems to be a steady stream of drugs that do not work getting approved for use and we can only assume that the lack of financial backing is what is holding up RCH4 from progressing, which is almost criminal and certainly a life sentence for many while we wait for it to happen.
Please read through some of our extraordinary experiences.
For example in Vanessa`s case there is a photo of her in a wheel chair
after suffering onset of MND before going on Mexico holiday, back in Jan 2016. She is Genotype SOD1 LieThr variant. She is one of identical triplets - both her sisters and their mother died from ALS within 18 months of onset.
She has not used a wheel chair after starting Neuralzeta more than seven years ago (early 2016) and there is also a comparison Dec 2020 video clip showing her walking unaided demonstrating how remarkable some of these stories are (she is still going strong 2023 ALSFR-S 45).
This remarkable story does not seem to be unique amongst Neuralzeta users.
Photo Gallery
Vanessa Jan 2016. She Started RCH4 in Feb 2016.
Triplets: Photo 2010
Vanessa June 2017
Vanessa Dec 2020
☆☆☆ About Neuralzeta ☆☆☆
Neuralzeta has been made available to people suffering from ALS / MND who have applied to the Neuralzeta charity via their website and have been lucky enough to be successful in receiving the drug. There are many users from all over the globe. The only pre-requisites for getting the drug are that your Dr or Neuro gives permission to try this Pre-Trial drug. This has lead to many of us having this awful disease progression halted, as the success rate of the drug seems to be about 86% of patients who take the drug which far exceeds any other treatment for ALS / MND. In some people it has slowed progress to an extremely slow rate and in some has actually halted the progress of the disease altogether. All of the users of Neuralzeta are not charged in any way for the drug but are asked to keep detailed records of their experience of Neuralzeta.
The suppliers of Neuralzeta have had to take this approach with the drug as they do not have the funds to take Neuralzeta to official FDA trials and have instead used their limited budget to actually produce the drug and help people with it. The downside is that the limited resources means that many cannot get the drug as the charity just cannot afford to supply everyone for free and they refuse to take any payment of any description for the drug. This hopefully will pay dividends to them in the end, as a large corporation will ultimately take over the future of Neuralzeta and then take Neuralzeta to FDA trials and hopefully get the drug out to the greater ALS / MND community to help many others.
The safety of the drug has already been very well proven over several years, with none of us users having any side affects at all.
The charity who supply Neuralzeta to us, have their own website
If you have ALS / MND or care for someone who does, please go and visit the site. Even if you do not intend to inquire about Neuralzeta, the site has a huge amount of great information and professional advice for people searching for answers about ALS / MND.
☆☆☆ The Future for Neuralzeta ☆☆☆
In order to help get Neuralzeta to market, we as people diagnosed with ALS will appreciate your assistance and support if you know of anyone who can help.
Neuralzeta was developed by an informal research charity consisting of scientists, with funding help from a few churches in the U.K. Although an unorthodox method to discover and fund a promising treatment, this chosen method allowed the informal research charity to gather a massive amount of robust safety as well as efficacy data, over the last eleven years. The intention of the Neuralzeta Research Charity is to donate the data obtained from PALS living in four continents to whomever takes control and brings Neuralzeta through formal clinical trials, to legal approval and ultimately to the patients in need on a global level.
Neuralzeta has proven that it is both safe and the most effective treatment for ALS.....to date. The informal research charity has reached the extent of what it can accomplish with the available funds and unpaid staff. Pursuing the trials will require additional resources both human and financial.
Therefore, we are seeking at present:
• An established firm or individual to take control of all financial and formal aspects with respect to implementation of trial process to then broker a proper pharmaceutical company to manufacture and bring the drug to the market. This is no easy task, as the successful entity will be in control of the very best, patented treatment for ALS, and possibly other neurological diseases, thus far. This is obviously not a cheap exercise and is why the charity cannot afford to progress themselves but if successful with FDA trials, the opportunities for financial return are huge.
We the users of Neuralzeta who run this website, are helping to try and find interested parties to take this drug forward, as the charity will not be able to fund the drug for us indefinitely which is obviously worrying for us, and so the earlier this drug becomes more readily available, the more secure our future is as well.
- If you are interested or have a promising lead to other potential sponsor/contact, please fill out the Contact Us form HERE.
This is only intended to provide background information and is not an invitation to invest
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