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Breaking News!
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Crolles, February 2018
In 2018, Association NEURO-GEL En Marche in partnership with THE INTERNATIONAL SPINAL CORD INJURY TREATMENT CENTER, at the Tongren Hospital in Kunming, China has plans underway to conduct a series of operations for treatment of chronic lesions of the spinal cord using activated fat--a three-dimensional autologous matrix derived from adipose tissue combined with erythropoietin (EPO),
FUNDING A 12 PATIENT STUDY.
Association Neuro-Gel en Marche must bear the financial cost for the study and launched a fundraiser with the goal of obtaining funds to cover the costs associated with treating a minimum of 12 volunteer patients: 6 American or French patients and 6 Chinese patients. Volunteers can leave their contact information at ________ web site.
A reliable estimate of the cost for 12 patients in China has been quantified with the Tongren hospital. The total cost of operations with a one month hospital/clinic stay, including surgery, 11 months of physiotherapy in China, all related medications (including EPO) and quarterly analyses (Kunming scale, scanner, MRI, radios, etc.) is 720,000 euros for 12 patients.
This cost includes stay in a private ("luxury") room. Some patients may require unique nursing assistance. This and meals are the responsibility of the patient.
Currently, the Association, with the help of various donors, has raised 350,000 euros: half of the required sum.
In anticipation that full funding will be obtained, the Association is now recruiting volunteers willing to undergo surgery, followed by a year of rehabilitation at the Kunming Hospital in the Yunan province of China.
The Kunming Hospital is an international center for the treatment of spinal cord injury that has performed over 5,000 operations on chronic and acute spinal cord lesions with different therapeutic pathways such as Schwann cells, adipose tissue derived stem cells, mononuclear cells from umbilical cord, accomplished with or without lithium.
The team of Drs. Zhu and Liu, who will accomplish the surgeries and strictly monitor rehabilitation protocols, regularly accomplishes a surgical protocol developed by the late Dr. Antonio Reis for implantation of an activated fat composition using EPO developed by Professor Gorio at the University of Milan.
The surgical protocol has proven crucial to release the spinal cord from the stresses associated with various pressures caused by fibrosis, arachnoid cysts, dura mater attached to the vertebrae, poorly fitted vertebrae, cavities syringomyelic.
As a result, perfect circulation of the cerebrospinal fluid, to rebuild conduit to the brain occurs and whenever possible, restores the rachis, removes the adhesions, the cysts and removes the necrotic tissue or tissues so that the medullary cord may no longer undergo any vascular constraint. Essentially becoming like a guitar string, free of any movement!
The Kunming Tongren Hospital has decided to use the activated fat obtained from the patient’s adipose tissue, combined with Erythroproïtein (EPO).
Previously, Dr. Liu's team of neurosurgeons used stem cells derived from the patient's adipose tissue to fill the cavity present after surgically exposing the spinal cord then after being perfectly curetted, the spinal cord is given an anatomical dimension again.
However these stem cells had limited survival capability; they did not necessarily remain on the lesion site and they did not have the ability to promote true tissue regeneration. The results were mixed despite some signs of recovery.
Upon reviewing Professor Gorio’s research results, Doctors Zhu and Liu quickly understood the importance of the activated fat and EPO. This three-dimensional bio-adhesive autologous matrix has not undergone any genetic or enzymatic modification and contains stem cells with strong survival and cell regeneration power.
Unlike artificial biomaterials such as hydrogels, activated fat from adipose tissue is not fragile. It is easy to use and the implantation adjusts to fill the cavity occurring after removing all shapes of lesions from the spinal cord.
The extremely high levels of immunosuppressive, anti-inflammatory factors, and numerous cell growth factors have convinced Drs. Zhu and Liu that the stem cells will be able to attract and recruit the endogenous neural stem cells from within the activated fat to form and reorganize new and functional spinal cord tissue.
Professor Gorio has provided all available data on EPO and its key role in the organization of this neural regeneration in adults. This combined medication to be administered for a period of thirty days is described in the operating protocol (located on this web site).
TONGREN HOSPITAL PHYSICAL REHAB CENTER
The hospital has an intensive physical rehabilitation center. Physiotherapy is an essential element of this study and patients must accomplish the rehabilitation protocol for at least 12 months. This is because post-surgery, rigorous rehabilitation is required to accomplish significant functional re-education to allow the nerve fibers to form synapses and reach neural targets. As such, it is necessary to stimulate the sub-lesional pathway through physiotherapy.
Dr. Zhu's team has a very precise protocol of 36 hours of rehabilitation per week with walking, mobilization, acupuncture, stand-up, ground exercises, low frequency electro stimulation and physiotherapy.
The progress assessment is based on the Kunming scale, a program developed by Dr. Zhu. Patients stay at the International Center and will benefit from all the necessary nursing care.
VOLUNTARY PATIENT INCLUSION CRITERIA.
• Voluntary patients should be aware that the surgical procedure will represent only part of the regeneration process. Surgery alone will not produce healing.
• Patients will have to agree to undergo intensive therapy of at least one year at the physical rehabilitation center of the Tongren Hospital in Kunming, China or possibly at the Step by Step Center in Barcelona (in this case, at their own expense).
• Before signing up, patients should consider the long-term implications and should be prepared, if need be, to devote themselves to years of rehabilitation.
• The patient must have a complete motor and sensory deficit. Score ASIA A = no traction or sensitivity in the Territory S4-S5
• The age of the patient should be between 20 and 55 years.
• No restriction as to the age of the lesion
• No restriction on the size and/or number of lesions
• Complete or incomplete paresis
• Incomplete lesion
• Lesion between C5 and T11
EXCLUSION CRITERIA
• - The level of injury limited to C5 for quadriplegics
• - Minor Patient and under 20 years of age
• - Diabetes
• - Hepatitis B or C Infection
• - Acquired immunodeficiency syndrome
• Tendon restriction and inability to maintain a vertical station.
If you meet the criteria listed above and your application is accepted by the neurosurgeon, please contact the President or Vice-President of the Association at _____________.
To complete their application, volunteer patients will have to undergo a series of tests including and provide the following to the medical team:
- MRI of the lesion
- MRI of thigh and calf muscles
- Spinal Xray and/or scan
- Electromyography of muscles and peripheral nerves
-Somatosensory Tests (Evoked Motor and Sensory Potentials)
- Rorschach’s,Rozenzweig’s and Raven’s psychological tests, and the Minnesota Multiphasic Personality Inventory.
- Bloodwork and urine analysis
The completion of these tests can take 2-3 months depending on the availability of hospitals and doctors.
The patient will have to sign an informed consent form in which a summary of the procedure and the risks involved will be clearly defined. The patient will also have to undergo a series of tests during the year following the surgery, as well as enroll in a predetermined physiotherapy protocol, the Kunming scale.
The patient will remain anonymous but will have to accept the disclosure of the personal data collected for a possible medical publication.
The risks are minimal because the activated fat is an autologous tissue ( belonging to the patient) taken at the abdominal level, without chemical or genetic modification, and that has never caused rejection, mutagenicity, and inflammation.
The cytokine called erythropoietin used in the therapy is well-known and well-controlled.
SURGICAL RISKs
Patients will be required to sign a more detailed consent form identifying all risks. They include:
• Medical complications after anesthesia, including death.
• Infections due to the neurosurgical aspect of surgery, such as meningitis, myelitis
• The neurological symptoms may worsen after the procedure due to the presence of debris and the implantation of the activated fat. Note that this risk is higher in patients with cervical lesions.
• -Injury caused by post-operative swelling of the spinal cord, which may result in a higher level of injury.
• Secondary Syringomyelia in the segment of the spinal cord, as a late complication
• Other post-operative complications include post-operative complications such as pneumonia, deep vein thrombosis, scarring and urinary tract infections.
VOLUNTEER PATIENT CONTACT INFORMATION
Potential volunteers can leave their contact information at ________ (web site?). Any information provided will be handles with the strictest confidentiality.
Director's Overview
Director's Overview
We are a non-profit organization dedicated to advancing spinal cord injury and neurodegenerative disease research, cures and rehabilitation.
Everyday there are new discoveries and Neurogel en Marche - USA is uniquely connected to bring results. Many talk, but few are able to make a difference for not only the millions injured but their families, children, friends, care-givers--all those hoping for a cure.
Not everybody can take an active part but if we all unite we can make this dream come true. Let us defer no longer--any donation -- large or small -- will help improve life and joy.
Mission Statement
Mission Statement
"To Hope...To Walk...To Live"
"To Hope...To Walk...To Live"
The Thanksgiving season is upon us; and we all have many things to be thankful for. This includes all the people, family, friends and professionals who have been "called" and remain dedicated to finding a cure for chronic spinal cord injury and other neurological diseases. We remain committed, and hope with your help, to starting our clinical process early 2017.
In November 2002, Michele Zander, Director of Neurogel en Marche – USA experienced a life changing injury as the result of a rare arteriovenous malformation (AVM) that required surgery. Two failed embolization procedures left her completely paralyzed from the waist down with little chance of recovery, according to her doctors. She persevered and after contacting SCI experts, she chose to undergo a surgical procedure (laminectomy) about 30 days later. This surgery removed the AVM and, following months of strenuous rehabilitation, she was able to walk with the aid of a walker although with constant, tremendous neuropathic pain, and diminished sensory function.
Michele became aware of a “crisis of despair” during the course of her rehabilitation and the following 14 years. She met many people from all ages and walks of life who had become paralyzed as a result of ridiculous, freaky occurrences. A man who was working on his roof fell and became quadriplegic. An 18-year old girl fell asleep at the wheel and woke up in a ditch, paralyzed. A woman went for a walk and a tree branch fell on her back, paralyzed. A football player slipped on a bar of soap, paralyzed. She met numerous young men at a rehabilitation hospital who lost use of their limbs following gunshot wounds. Medical staff would unknowingly discourage her and others by urging them to accept their physical limitations. Essentially they were saying: “Give up! There is nothing you can do.” Broken lives, too many to recount of desperate people who, like her, were denied hope because there was no known cure yet.
Because of this crisis that knows no borders, Michele felt compelled to create Neurogel en Marche - USA to obtain funding for ground breaking research and therapies to help those experiencing the effects of spinal cord injury or other neuro-degenerative diseases such as Parkinson’s diseases and skin lesions such as scleroderma and bed sores.
Our mission is to promote finding a cure and therapies for chronic spinal cord injury and other neurodegenerative diseases by seeking funding and directing it to the most promising scientific endeavors. As a result keep hope alive; make dreams come true; and do good for many.
We will Never Give Up!
We will Never Give Up!
Jean Luc Gay
Jean Luc Gay
President
President
Assoc Neurogel en Marche
I suffered an injury 20 years ago that left me paraplegic. I became an active member of NeM in 2002; and President in 2005 focused on bringing a cure for the millions directly and indirectly affected by SCI . After all these years I am certain we are now on the verge of a cure for SCI and neurode-generative disease. I will require aggressive physical therapy prior to surgery. For the sake of my family I hope one day to benefit from the latest discovery.
Frédéric Jouan
Frédéric Jouan
Webmaster
Webmaster
Assoc Neurogel en Marche
I have been quadrapegic since 2001 and have two caregivers that attend to my needs. Because of the extent of my paralysis, I understand the causes and effects of bedsores, to include fevers and muscle atrophy. I became an active member of NeM in. 2002; and web master in 2006. After all these years I am certain we are now on the verge of a cure for SCI injury, and most notably cures for the effects of skin lesions. I hope to be one of the first treated. .
Pierre Rondio
Pierre Rondio
Chief Executive Officer
Chief Executive Officer
Assoc Neurogel en Marche
I am a care giver and an activist. I became an active member of NeM in. 2002 in hopes of finding an SCI cure for my beloved who was injured in 1996 that left her quadriplegic C5. I have served in various NeM leadership positions; always driving forward in search of an SCI cure. I think we are on the verge of a cure and hope my beloved will be one of the first to benefit from the latest development.
Prof Alfredo Gorio
Prof Alfredo Gorio
Researcher
Researcher
As Professor of Pharmacology and Clinical Pharmacology; Dept. of Health Sciences, Faculty of Medicine, University of Milan,
I have been directly involved in ongoing research and I know with my methodology we are on the verge of a cure for SCI and other neurodegenerative diseases. Funding is now the issue. Once received, we are prepared now to initiate our timeline to achieve successful cures.
Prof Antonio Reis
Prof Antonio Reis
Neurosurgeon
Neurosurgeon
We extend our condolences to the family and friends of Prof Antonio Reis. Our dear friend passed away after years of passionate dedication to finding a cure for spinal cord injury--this hero will live in our hearts and minds forever.
Zelda
Zelda
Mascot - Care Giver
Mascot - Care Giver
I am aware of the NeM efforts and I am excited because I understand the latest cure will not only work for my human owner but it will also help the population of injured animal care givers.
Steve Zander
Steve Zander
Chief Financial Officer
Chief Financial Officer
Neurogel en Marche - USA
A humble caregiver, activist and military veteran whose family life changed significantly in 2002 when my beloved wife Michele became paraplegic. Since that 1st ER visit, I witnessed humanity heroically undergoing traumatic tests of hope and faith. This includes sharing a hospital recovery room with amazingly dedicated wounded warriors or seeing them move about living with after effects of severe injury. Thankfully, many do not lose hope and persevere. My "calling" is to make a difference now for these heroes—the injured, their families and care givers from all walks of life. I believe our Champions are on the verge of a cure for SCI and neurodegenerative diseases. I pray that by uniting the many, we bring this cure to all mankind within our 24-month timeline.
Key Research
Key Research
Our Next Step
Our Next Step
Obtain funding to hire a Clinical Research Organization (CRO); for basic research costs to prepare for and conduct a human clinical trial phase 1 and documentation of results.
Donate for Spinal Cord Injury, Neurogenic Degenerative Disease Research, Clinical Trial Phases and Rehabilitation
Donate for Spinal Cord Injury, Neurogenic Degenerative Disease Research, Clinical Trial Phases and Rehabilitation
Any donation, large or small will help
Any donation, large or small will help
Promote finding a cure and therapies for chronic spinal cord injury and other neurodegenerative diseases by directing funding to the most promising scientific endeavors.
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