It was born from the refusal to resign itself to disability.
She grew up with a fierce and still intact desire to give back to those injured in life all the uniqueness of human beings, that of being a biped, de se tenir debout et retrouver sa dignité.
She then set herself the ambitious goal of being a key player in bringing treatment of spinal cord injuries to clinical trials.
She took on this challenge and kept her promise with the help of many volunteers and donors , THANK YOU to all of them.
Our original project was to support the idea that an old spinal cord injury could only be treated with a growth matrix to allow neuronal regrowth.
The association then supported the principle of a synthetic 3D growth matrix called .
This biomaterial was developed by Doctor Stéphane Woerly, a French researcher based in Canada.
The need for a cell growth matrix is now widely recognized in spinal cord injury research.
After the aborted project of a clinical trial in Mexico at the end of 2002, the Neurogel en Marche association attempted to conduct a clinical trial in France in 2003 at the Pré-au-Mans clinic, which agreed to provide its technical platform free of charge for surgery at 3 or 4 patients.
The association then asked the Ministry of Health to exceptionally allow a temporary authorization for use (ATU) of Neurogel ™ for these patients.
We then had a few batches of perishable Neurogel ™ that had been prepared and tested in Canada.
de permettre exceptionnellement une autorisation temporaire d’utilisation (ATU) du Neurogel™ pour ces patients.
Nous disposions alors de quelques lots de Neurogel™ périssables qui avaient été préparés et contrôlés au Canada.
pour cet essai réduisant à néant deux années de travail et d’investissement.
This refusal by the Ministry of Health plunged the members of the association into the greatest dismay. The Neurogel en Marche association is currently measuring the regulatory and financial requirements to conduct a clinical trial. She then understands her deficiencies:
- She is not familiar with clinical regulations
- She has little knowledge of chronic spinal cord injuries and the world of disability
- It is poorly structured in its organization, its communication, its resources
- It does not communicate with any researcher and is mainly limited to supporting the developed by Dr. Woerly
She then noticed that a preclinical study with Neurogel ™ in an old lesion in rats gave poor results. The association realizes that it lacks sufficient scientific knowledge and begins to approach other researchers. She understands that Neurogel ™ alone will not be enough to achieve tangible results. This new data is difficult to live with. The association should seek to understand the key conditions to achieve more optimal regeneration with Neurogel ™. The association must take over research and all preclinical projects. This news is creating tensions in the association, with its principal investigator plunging everyone into legal channels and painful infighting that cost the association two years. .
Finally she survives and recovers the Neurogel ™ patent but finds herself alone to carry out a new project.
The association is then obliged to do substantive work and structure itself: :
– Creation of a scientific council after having contacted and analyzed the work of dozens of researchers around the world
– Creation of an optimized website
– Learning of, preclinical and clinical costs, writing of files.
– Communicate with the press and disability-related institutions
– Launch preclinical studies and fundamental research (University of Marseille, University of Milan, University College of London, Stempeutics Bangalore in India) )
– Have an accountant
Finally in 2009, the association brought together key players in basic research, applied research and clinicians at a meeting in Prague. .
The bases of our clinical project are finally assembled.
From 2010 the association entrusted all its preclinical work to the team of Professor Alfredo Gorio from theUniversity of Milan.
The association has already supported various publications and we have learned that regenerating neurons in the central nervous system produceerythropoietin (commonly known as EPO) and have EPO receptors.
This is a key element of regeneration and from which the association has guided all its research.
Based on its experience, the association then knows that there are 3 major medical conditions for carrying out a clinical trial.
1 / CURATIVE SURGERY
Neurosurgeon Antonio Reis, member of our scientific council, has shown that removing the lesion scar in the spinal cord and replacing it with a cell growth matrix is not sufficient to achieve regeneration. .
It is necessary to restore the entire site and environment of the lesion, remove all arachnoid cysts, all fibrosis, all adhesions sometimes several centimeters from the injured site until the spinal cord is completely free and the blood circulation. cerebrospinal fluid returns to normal. .
2 / A SPECIFIC CELLULAR GROWTH MATRIX and EPO
To achieve neural regrowth you need a biocompatible 3-dimensional cell matrix, containing specific ones that express key factors of neurogenesis, anti-inflammatory and immunosuppressive factors to allow this regrowth and the addition of EPO to stimulate this regrowth. and
3 / AN INTENSIVE PHYSIOTHERAPY
This last point was seriously taken into account in 2009 by the association Neurogel en Marche.
Numerous new studies had just shown that intensive stimulation of the pathway beneath the lesion was essential to hope for axonal regrowth, with maximum ground support.
For two years the association spent several months in various specialized private centers in Europe:
- Giusti Center in Florence, Italy
- Dikul Center in Wroclaw, Poland
- Akson Center in Wroclaw, Poland
- Theramax in Alte, Portugal
- Step by Step Foundation in Barcelona, Spain
In the end, the association decides to choose the foundation Step by Step and forge a close bond with her as part of a clinical project.
We then wish to do the surgery at Portugal with doctor Reis.
The Neurogel en Marche association was received in 2010 at theElysée to obtain funding for this purpose.
It is now recognized as being of general interest and the National Medicines Safety Agency recognizes the quality of the overall project developed by Neurogel en Marche..
After identifying the key factors necessary for regeneration, the team of Professor Alfredo Gorio of the University of Milan developed in 2014 a new matrix derived from adipose tissue,the actived fat which contains stem cells that express EPO and which contains all the key factors of neurogenesis.
She seeks to produce a machine capable of producing activated fat under specific sterile conditions. She is also developing and imagining other treatments with activated fat, in particular for damage to the dermis (bedsores, burns, scleroderma, etc.)
Funding is struggling to come, we are starting to look for external collaborations to finance a clinical project on the dermis.
Links are made with laboratories andmanufacturers of medical devices.
But industrial or pharmaceutical investors are not receptive, prefer to wait.
In 2015, Doctor Antonio Reis wrote the operating protocol for a clinical trial then planned in Lisbon, Portugal.
We therefore hope to carry out a clinical trial in 2016 .
The year 2016 will prove to be catastrophic and fatal for the association Neurogel en Marche.
We lose our neurosurgeon, Dr. Antonio Reis, which brings our entire clinical project to the ground.
Professor Alfredo Gorio, who is having hip problems and needs to have an operation, is devastated, can’t imagine any way out .
A long collaboration is reduced to nothing.
AND then we lose our dear Stéphanie Mauberret, our secretary, who went through ordeal due to cancer.
Our president, Jean-Luc Gay, Stéphanie’s companion, had already ceased his function within the association for more than a year, he who has worked enormously; we thank you Jean-Luc. .
By then, most of the association’s historic members had no more hope.
In recent years, Neurogel en Marche had already been criticized for raising a hope that never came.
An association that has failed to unite paralyzed people.
The idea of dissolving the association was clearly being considered.
However, it also meant that all the work of Stéphanie, of all those who had lost their lives since 2002 and who had given a lot of themselves would have been in vain?
So, thinking of these people we are quoting here:
Notre regretté Webmaster Frédéric Jouan, décédé en Avril 2020 juste après le début de notre essai clinique.
We had to continue and honor their memories !!
The association then looked around the world for a team capable of carrying out our protocol.
And then suddenly, at the end of 2018, after some discussions with the International Center for Spinal Cord Injury at Tongren Hospital in Kunming, a video conference meeting, a meeting in Barcelona, the light came from the city of eternal spring and we are finally out of darkness !!