Acquired Spastic Equinovarus Deformity in case of my son Marc: ( in case of Marc we have also dystonia as well in his legs) .
Spastic equinovarus foot is due to spasticity and dystonia of the calf muscles (soleus, gastrocnemius and tibialis posterior), often complicated by contracture and by the weakness of peroneus longus and peroneus brevis muscles
Videos before splm/ after 4 months Splm on links :
2) second etude splm: https://www.researchgate.net/journal/Minimally-Invasive-Surgery-2090-1453/publication/343767239_Minimally_Invasive_SPML_Surgery_for_Children_with_Cerebral_Palsy_Program_Development/links/617bf69feef53e51e1009356/Minimally-Invasive-SPML-Surgery-for-Children-with-Cerebral-Palsy-Program-Development.pdf
3)Nuzzo :
R. M. Nuzzo, “SPMLs: selective percutaneous myofascial lengthening in velocity-dependant neuromuscular gamma-efferent high-gain feedback oscillation syndromes—or how I came to like the word “percs”,” Cerebral Palsy Magazine, vol. 2, no. 4, pp. 30–37, 2004.
Comparaison methode Ulzibat ( celle qui fait Nazarov en Espagne) et méthodes de Dr Nuzzo est mieux expliquer sur page de Dr Bernius : ( je crois en fb page tu peux choisir langue que tu veux ?)
So our operation it was ok till point of wake up … after that point It was difficult 😥
Marc was crying one leg didn’t support cast it was his dystonia…. We had to cut it off even before Nuzzo arrived back …..
It was very very difficult 😥
Dr Nuzzo he did new cast ( much looser) and open cast – dystonia of Marc not support real cust on his right leg
Left leg – he has no problems….
He had bad dystonia reaction on his right leg – soring/ temperature etc…. It was torture ….. ( I imagine not all patients has it) because boy before us from Canada was absolutely ok at getting out from hospital it was us – extreme crying and pain…
Doctor Nuzzo came back for us to hospital 40 minutes later …( we had to take off cast with nurses before he come back in urgency and it helped instantly) …. Yes as soon as we cut off his cast it helped instantly my son come from crazy crying to smiling ! Honestly !
Dr Nuzzo was escorted by police to get back quickly ….
He did new cast ( pre opened) which I can took off and he explained about dystonia…
It was difficult day I can’t tell it otherwise
Hopefully we will have results
For moment marc is just resting and don’t want to walk even to toilet
He did vomited also ( all around our hotel room) this i think Anestesia reaction…
( after vomiting feels better)….
1st day after operation :
He is better ( not yet walking ) but better he is in good mood
I can see his foots are really in stright position ( yes it’s impressive !) haw position of foot’s changed
So for naw we are just waiting when he has less pain in right foot ( to bear weight)
He can stand on his left foot but not right foot yet ( this one yet a bit hotter than left one and a bit more swollen)
So we take all with patience and give some time to Marc to recover.
2 d day after operation
Marc did 5/6 steps with help of his parents both side till toilet !
Yes it takes time to ré walking …
He also can walk 10-20 meters with Alinker bike help
Upset stomach this day ( may be medications during operation?)
3d day after operation:
We visited Atlantic City it was nice but a bit tired at end
I found his right leg more swollen after much walking….( on bike Alinker) but still it’s a lot of effects for transfers/ and some steps around bass in our hotel room – not real “ walking yet “
A lot of blue marks on foots and still pain in foots.
6 day :
Can walking a bit without holding but still bad balance and dystonia planing tricks so he stress and can lose control …
A lot of bike training but not much walking without Alinker…. (50 meters ? Before splm my son could walk independently 800 meters at least)….. so not yet at point of pre- operation level of independence – can’t go to toilet alone – can’t clean his teeth alone as before – not yet…
Dr Nuzzo said me that’s because in case of Marc it’s dystonia ( so not the same as spasticity and that’s why we saw big reaction to cast on his right leg had to cut asap just after operation and as soon as we took off cast on left leg – also dystonia reaction – left leg was teurning inside – it was heurting ) naw he is making used about all this changes – so not so much dystonic reactions as I put back his casts and bandages them……
Tomorrow we are getting his AFO
Hope it will help
I think if he had no pain and this blues he started to walking even better alredy …( but he has it may be need 2-3 weeks to pass all this swallowing and blues…)
7 day:
Marc has started slowly walking with the AFOs.
He says he feels like walking on his heels. As I see it, it is a bit like walking with ski shoes. As I understood, the angle is meant to be this way so he bends more his knees and uses his hips more. But this gives him a strange posture. And he is claiming it’s “not confortable” he is walking worse with AFO than he was walking with casts is it normal?….
It’s first day with AFO may be he need to be used to them but it’s strange that in AFOs he is less confidence than in casts he had….. he can’t walking even some steps independently again in afos….
While on casts he alredy did ….
Exept that these afos is so large it was really difficult to find shoes and he can’t do any more bike ( We’ve tried the training bike, something he likes to do and he is motivated by, but the AFOS are too large for the pedals.)
I was terrible traveling back to france I don’t know why but it was the worst day after surgery ( marc had spasms) I gave Valium it helped only a bit…
Marc still complains and mainly the arc of the foot and he had spams during all travel ( it was very difficult on the plain he was crying as well)
I gave Valium and paracetamol but it helped only a bit
I had to take off his AFOs ( for me it looks like it’s really related to the position of his foots in AFO) when I dance with the hills on my shooses 12 cm during all night I also has spasms and can’t were hill for sometime after … if you see what I mean ?
So I don’t know what to do?
Marc even asked me his casts back ( he was obviously better in casts than AFOs but I done have them of cause….we left them at. marc office when we took AFOs)….
Réaction after just 1 day wearing AFOs is really conserning for me … ( I understand that all of the work he has been doing of practicing walking and exercising new muscles in new ways, is equivalent to someone going to do heavy workouts at the gym everyday. his muscles can sore and may spasm. it is part of the healing process… but this is real regression again – not walking at all steaming and refuse to put afos
He is not even giving me to touch his legs! Even touching heurts….)
I live him naw to sleeping after very very difficult travel ( most difficult in my life I think…)
And I need advice:
What I have to do?
We don’t how much he is in pain exactly
He has walked day before travel quite a lot with his afos . Maybe 30/45 minutes altogether
But even in the evening I found his feet more swollen and touching his ankles hurts him more than before AFOs….
May be instead of AFO I can use his old orthopedic shooses?
I don’t know…..
10 th day after operation
Finally I got answers from dr Nuzzo and Matt ( orthopedic dr):


12 th day after operation
What is important that he is better today 48 hours without right AFO and just small use of left AFO ( only in static positions) siting/ lying etc … Obviously his foots position improved enormously
So at any case his dystonia foot ( right still didn’t acsepted AFO after opening) so we stopped to use right AFO and just use left one while sitting ( watching tv or playing Xbox) and use Boots while walking : ( as dr Nuzzo advice)

some last videos of his progress : 22 and 23 days after Splm:
( at the stage you get person number you need to send NEW mail with number given) ! I did mistake to answer previous mail don’t repeat my mistakes 😉
So here instruction ver explicit : ( read well all points)
NSTRUCTIONS FOR TRANSFER OF INFORMATION BY EMAIL FOR CLINICAL TESTS
Email ct@cordbank.ru is designed for patients participating or planning to participate in clinical trials at the Dynasty Medical Center.
Sending messages to this e-mail indicates that you agree to the transmission of data, medical and other personal information via an open (unprotected by special means) communication channel.
Email is set up to help the researcher sort the letters and respond to them in a timely manner. When contacting the email address ct@cordbank.ru must follow the next rules, in case of the rules are not met, the researcher does not guarantee a response to the letter.
Incoming emails are processed in English and Russian, dates are displayed in DD / MM / YYYY format:
1. PRIMARY REQUEST FOR CLINICAL TESTS.
For the initial request for clinical trials, a letter should be sent to the researcher with the following heading:
PRIMARY _ CT _ REQUEST _ XX ,
Where XX indicate the clinical trial option: CP for cerebral palsy, AU – for autism;
Inside the letter you must provide the following information on the form:
Additionally, we request (this will help us to quickly determine the possibility of treatment) the most complete information about: is current medical condition of the patient, a brief description any held treatment and its effectiveness.
Further correspondence is conducted by replying to the previous letter so that the history of the correspondence is not interrupted. Please do not manually change the message header, do not send repeated requests and do not send new emails with attachments. If you are included in the study, you will be given a number with which you will continue to correspond with the researcher (see point 2).
2. FOR PATIENTS AT THE FIRST STAGE OF CLINICAL STUDY (SELECTION)
Patients included in the first stage of the study (selection) receive from the researcher an individual number that will need to be reflected in the title. Please make a NEW email with a NEW header. The new header will automatically sort your letters in the working group. Please write the first letter after entering the first stage of a clinical trial according to the following pattern:
CT_XX_S1 NNN,
Where XX – clinical trial option: CP for cerebral palsy, AU – for autism; NNN – a unique individual
number assigned to you by the researcher.
Patients can ask questions; send the requested documents (pdf, jpeg) at any time. Further correspondence is conducted by replying to the previous letter so that the history of the correspondence is not interrupted. Please do not manually change the message header, do not send repeated requests and do not send new emails with attachments.
Name of the patient
Date of Birth
Diagnosis
dates of diagnosis
Patient weight
Level GMFCS or ATEC
3. FOR PATIENTS ON THE SECOND AND THE THIRD STAGE OF A CLINICAL RESEARCH (SELECTION OF A GROUP AND PROCEDURE FOR THE INTRODUCTION OF CELLS).
After you have been assigned to the first or second study groups, and later, throughout the duration of the procedures, you can communicate with the researcher at any time on the topic of the clinical study. In order for you to receive prompt responses, you should change the subject of the heading in the following pattern:
CT _ XX _ S 2-3 NNN,
Where XX – clinical trial option: CP for cerebral palsy, AU – for autism; NNN – a unique individual
number assigned to you by the researcher in the second stage.
4. AFTER CONDUCTING THE INTRODUCTION OF CELLS.
After the first infusion of cells, the second infusion and until the end of the study, patients should transmit information about the effectiveness of treatment, for this, it is necessary to arrange the letter header as follows:
CT _ XX _ S 4 NNN,
Where XX – clinical trial option: CP for cerebral palsy, AU – for autism; NNN – a unique individual
number assigned to you by the researcher in the second stage.
All subsequent letters with research results should be sent in response to the first letter, without changing the title. Any questions or events about undesirable reactions should be sent to the researcher with such a title.
Инструкция по передачи информации по электронной почте для клинических испытаний. V003.02072019
( at the stage you get person number you need to send NEW mail with number given) ! I did mistake to answer previous mail don’t repeat my mistakes 😉
So here instruction ver explicit : ( read well all points)
NSTRUCTIONS FOR TRANSFER OF INFORMATION BY EMAIL FOR CLINICAL TESTS
Email ct@cordbank.ru is designed for patients participating or planning to participate in clinical trials at the Dynasty Medical Center.
Sending messages to this e-mail indicates that you agree to the transmission of data, medical and other personal information via an open (unprotected by special means) communication channel.
Email is set up to help the researcher sort the letters and respond to them in a timely manner. When contacting the email address ct@cordbank.ru must follow the next rules, in case of the rules are not met, the researcher does not guarantee a response to the letter.
Incoming emails are processed in English and Russian, dates are displayed in DD / MM / YYYY format:
1. PRIMARY REQUEST FOR CLINICAL TESTS.
For the initial request for clinical trials, a letter should be sent to the researcher with the following heading:
PRIMARY _ CT _ REQUEST _ XX ,
Where XX indicate the clinical trial option: CP for cerebral palsy, AU – for autism;
Inside the letter you must provide the following information on the form:
Additionally, we request (this will help us to quickly determine the possibility of treatment) the most complete information about: is current medical condition of the patient, a brief description any held treatment and its effectiveness.
Further correspondence is conducted by replying to the previous letter so that the history of the correspondence is not interrupted. Please do not manually change the message header, do not send repeated requests and do not send new emails with attachments. If you are included in the study, you will be given a number with which you will continue to correspond with the researcher (see point 2).
2. FOR PATIENTS AT THE FIRST STAGE OF CLINICAL STUDY (SELECTION)
Patients included in the first stage of the study (selection) receive from the researcher an individual number that will need to be reflected in the title. Please make a NEW email with a NEW header. The new header will automatically sort your letters in the working group. Please write the first letter after entering the first stage of a clinical trial according to the following pattern:
CT_XX_S1 NNN,
Where XX – clinical trial option: CP for cerebral palsy, AU – for autism; NNN – a unique individual
number assigned to you by the researcher.
Patients can ask questions; send the requested documents (pdf, jpeg) at any time. Further correspondence is conducted by replying to the previous letter so that the history of the correspondence is not interrupted. Please do not manually change the message header, do not send repeated requests and do not send new emails with attachments.
Name of the patient
Date of Birth
Diagnosis
dates of diagnosis
Patient weight
Level GMFCS or ATEC
3. FOR PATIENTS ON THE SECOND AND THE THIRD STAGE OF A CLINICAL RESEARCH (SELECTION OF A GROUP AND PROCEDURE FOR THE INTRODUCTION OF CELLS).
After you have been assigned to the first or second study groups, and later, throughout the duration of the procedures, you can communicate with the researcher at any time on the topic of the clinical study. In order for you to receive prompt responses, you should change the subject of the heading in the following pattern:
CT _ XX _ S 2-3 NNN,
Where XX – clinical trial option: CP for cerebral palsy, AU – for autism; NNN – a unique individual
number assigned to you by the researcher in the second stage.
4. AFTER CONDUCTING THE INTRODUCTION OF CELLS.
After the first infusion of cells, the second infusion and until the end of the study, patients should transmit information about the effectiveness of treatment, for this, it is necessary to arrange the letter header as follows:
CT _ XX _ S 4 NNN,
Where XX – clinical trial option: CP for cerebral palsy, AU – for autism; NNN – a unique individual
number assigned to you by the researcher in the second stage.
All subsequent letters with research results should be sent in response to the first letter, without changing the title. Any questions or events about undesirable reactions should be sent to the researcher with such a title.
Инструкция по передачи информации по электронной почте для клинических испытаний. V003.02072019
I am sorry I am brain injured child mum so i am scepical and veru critical… ok? So this is just my thoughts about Neuralink presentation:
1)Cortical only level for naw ( they don’t go yet deeper)?
2)Elon Musk Neuralink haw much he gains 2020?
3) I am sorry that I am so critical but I am firsthand want to see proofs that it’s works ? To put in head of healthy pigs don’t prove anything to me ?
Not into paralyzed pigs ?!
4) Honestly he was talking about deep brain stimulation ( at the beginning) I personally know 3 children’s – the inventor of DBS is french neurochirurgien -as I was told – (professeur Philippe COUBES ? )I met him – so in 3 children’s I know which had sdb by him – it’s in fact don’t work 2-3 years – after still searching level of stimulation neded ….
I don’t know even one person for whom it’s works DBS? there’s re a lot published studies and they are sayin it’s works…where they 150000 persons for who un it worked I am searching them for 2 years! ? Any testimonials?
they are giving technical briefings to bring in the best talent to bring this device to every person who needs it (great, but of course CEO Elon made $ 30,000 billion this year)?
Our brain is like an electrical network, and when it is damaged, it emits weak signals (but can electronics be compared to biology?) Neural communication amplifies weak signals (and much more in terms of reading and writing to the brain) and in the distant future will the tertiary level of the brain’s AI to do what the neural connection cannot do. Is this the largest technological and medical development since the 1800s. ????? I am not sure about this ….
Have they already got FDA approval for a breakthrough device? Is it money or real progress? An artificially implanted chip? I have a lot of questions and I am very careful about this …
All this is PR and money making? Better to promise to send people to Mars. It is normal to collect money from dreamers, but not from the sick.
Yes. Work is underway on impulse-controlled prostheses. And if you manage to decorate the signals, then you can mentally control some auxiliary devices. It is a well-known misconception that we can surpass our creator. It is enough to look at the medieval paintings of how they tried to make a man with the help of springs and gears.
They do not yet know how to translate the chemistry of the brain and thinking into a conscious binary code. While they can train a person to strain something and relax something simple. For example, take a glass of prostheses controlled by a brain impulse.
So it’s gives realistic perspective….
Also : « « Former employees told Stat News that the company was chaotic, and that researchers were under intense pressure to rush through projects. Scientists were sometimes given weeks to complete projects that should take months, for example. “They are building a medical device and a surgical approach to implant that medical device, and they’re approaching it with the use of a tech company — move fast and break things,” one employee said. »
« The announcement of the technology was based on two white papers published in bioRxiv, reports written by NeuraLink scientists and not peer-reviewed. In both published white papers, no attempt has been made to use the recorded neuronal data for the purposes of a BCI, and no attempts to simulate neurons through NeuraLink have been reported.
It’s fairly likely the company has achieved more than is reported in the white papers, the nature of scientific research being that breakthroughs are sometimes made years before they can be published. »
« Neuralink’s microscopically slender electrodes are designed to provide longer-term recording than current electrodes and produce less tissue damage, but it’s still not clear how this will stand up over time. In the first study cited, recordings were made from one rat implanted with the electrodes for 60 days, with the implants falling off prematurely in the other three rats studied.
By comparison, the Utah array has reported longevity of six to nine years when implanted into a primate brain. »
You see I eventually don’t use any my own words ….
Dr. Olga Tyumina is the President of Ruscord, a non-profit organization of specialists and organizations in the field of procurement, storage and use of umbilical cord blood and cellular technologies. Dr. Tyumina is a prominent doctor in medical sciences, professor of the Russian Academy of Sciences, honored health worker in the Samara Region (Russia), and the Director of the Samara Regional Medical Center, Dynasty. She is the author of 120 publications and holds multiple patents, registered computer programs and monographs.
Dr. Stanislav Volchkov is the Deputy Director of the Samara Regional Medical Center, Dynasty, the Executive Director of the non-profit Hematopoietic Progenitor Cells Registry, Expert of the Fund for Assistance to Small Innovative Enterprises in Science and Technology, Founder of the Institute of Biotechnology and Pharmacology Inbiopharma, LLC, and is a certified designee for biomedical cellular products acquired by Ministry of Health of the Russian Federation.
In this live chat we will discuss the clinical trials, future research, and treatments currently provided at the Center of Cellular Technologies in Samara (Russia) using donor cord-blood transfusions and other stem cell therapies for the treatment of Autism, Cerebral Palsy and other developmental disorders.
In 2020 it was big pose ( because of Covid) and we decided as we can’t travel we bought Galileo plate…
In july 2020 I think somthing like that ( I don’t remember exactly date ) we didn’t use it a lot before our travel to center BrainMoove (end July 1 week ) but after our reteurn – Every day Galileo end August and September….
And Marc did stoped walking in October! And he was complaining about pain at same time yes he fall at school ( but finally naw with time I know it was Galileo plate – not the fall responsible)….
also just to add about Galileo plate ( my son good walker was using about 1 month a bit more …may be but in beginning of October … he stoped Walking and complained about pain ! We did radios and a lot of consultations and foud that his legs become much more stiffer than before ( why ? What the reason of spasticity just augmented so quickly and enormously?)
I was searching a lot it happened last year ) so I foud yes it could damage as well ( in standing position) he had pain in tibias posterior! – And guess what Dr Nuzzo will be operating him during splm? – on tibias posterior…. It’s augmented his stiffness enormously honestly – it took me 2 weeks intensive PT that he just restart to walking ( not as well as before) and about 3 months training that he approximately achieve his previous Level ( before starting Galileo) so it was our very bad experience – Galileo honestly…. He still didn’t achieve same level on stairs as before Galileo – so it’s one of mistakes I did and it was ours bad experience )….
“More significant adverse effects have also been reported including hip (Crewther et al., 2004) and knee pain Russo et al., 2003), and discomfort from the vibration induced head motion (Crewther et al., 2004). One study (Cronin, Oliver & McNair, 2004) reported participants to complain of pain in the jaw, neck, and the lower extremity (particularly in the tibialis posterior). The pain required physiotherapy treatment in some participants and took seven to ten days to subside.”
While it is known that Ia afferents inhibit motor neurons to the antagonistic muscle (Mester et al. 1999), vibration also induces a tonic vibration reflex (TVR) and increases muscle stiffness (Cronin et al. 2004;Mester et al. 1999).
« Researchers at Lyndhurst Centre caution that Whole Body Vibration may elicit inner ear troubles, dizziness, headache, lower-limb spasticity, fracture (especially among those with severe osteoporosis), and/or hardware loosening (plates or screws as a result of surgery).(20) »
July 2020 – 1 weeksGyrostim and neroplasticity brain center training 3h per day
so studies when it can cause problems:
1)“More significant adverse effects have also been reported including hip (Crewther et al., 2004) and knee pain Russo et al., 2003), and discomfort from the vibration induced head motion (Crewther et al., 2004). One study (Cronin, Oliver & McNair, 2004) reported participants to complain of pain in the jaw, neck, and the lower extremity (particularly in the tibialis posterior). The pain required physiotherapy treatment in some participants and took seven to ten days to subside.”
While it is known that Ia afferents inhibit motor neurons to the antagonistic muscle (Mester et al. 1999), vibration also induces a tonic vibration reflex (TVR) and increases muscle stiffness (Cronin et al. 2004;Mester et al. 1999).
2)« Researchers at Lyndhurst Centre caution that Whole Body Vibration may elicit inner ear troubles, dizziness, headache, lower-limb spasticity, fracture (especially among those with severe osteoporosis), and/or hardware loosening (plates or screws as a result of surgery).(20) »
3)Cardiovascular Stress Induced by Whole-Body Vibration Exercise in Individuals With Chronic Stroke : https://academic.oup.com/ptj/article/95/7/966/2686433
Normalement ils avez même pas le droit de nous vendre Galileo a cause que Marc a au aret cardiaque ….a 4 ans
4) this study showed that application of WBV to chronic stroke patients was not helpful for improving their immediate balance ability. The adverse effects of WBV have been reported in previous studies:
Whole body vibration may have immediate adverse effects on the postural sway of stroke patients
but hère good studies about :
Dernière étude 2019: The immediate influence of various whole-body vibration frequency on balance and walking ability in children with cerebral palsy: a pilot study:
« Le WBVT fourni par Galileo plate est caractérisé par des mouvements de bascule qui stimulent un modèle de mouvement similaire à la démarche humaine. Celles-ci entraînent l’activation de circuits vertébraux propriétaires-réceptifs, conduisant ainsi à des contractions musculaires rythmiques compensatoires dans les membres inférieurs et le tronc. Nos participants ont non seulement affiché des améliorations de la masse musculaire, mais également des améliorations de la teneur en minéraux osseux et de la densité allant de 1 à 5%. L’augmentation de la masse osseuse était probablement due à l’effet de l’action musculaire sur l’os pendant le WBVT, combiné aux effets de l’amélioration de la mobilité observée. Ainsi, nos résultats cadrent bien avec la théorie du mécanostat, dans laquelle la charge mécanique (dans ce cas, les contractions musculaires générées par la plate-forme de vibration et l’amélioration de la mobilité) a entraîné des effets positifs sur les os, tels qu’une augmentation de la masse osseuse. Notez que nos résultats étaient similaires à ceux observés par Stark et al. après 6 mois de thérapie combinée dans un groupe de 78 enfants atteints de GMFCS I à V, qui ont rapporté respectivement une augmentation de 2,3% et 5,7% de la densité et de la teneur totale en minéraux osseux. Cependant, leur intervention impliquait non seulement le WBVT, mais aussi d’autres formes de physiothérapie, de musculation et d’entraînement sur tapis roulant, ce qui rendait impossible l’identification des effets spécifiques du WBVT. Néanmoins, Wren et al. ont examiné l’impact de l’entraînement quotidien aux vibrations seul sur la santé osseuse des enfants atteints de PC âgés de 6 à 12 ans, observant des améliorations de la zone osseuse corticale par rapport à un régime de simplement se tenir debout sur le sol8.
https://www.nature.com/articles/srep22518.pdf
https://www.nature.com/articles/srep22518
Alinker: ( vélo – debout) pour marcher ( Marc manque encore 2 cm longueur des jambes)
Key takeaways from our live interview with Dr. Joanne Kurtzberg today re. the results of the phase-II trial using cord-blood infusions in children with Autism,
1. As noted in the Discussion section of the publication, the research Team believes that the lower than needed sample of children with non-verbal IQ > 70 might have compromised the results of the study. However, although the study did not meet the target outcome (as measured by the Vineland socialization scale), there were statistically significant improvements in the higher non-verbal IQ (NVIQ) cohorts particularly in 4-to-7 y.o. in communication scales, eye tracking and EEG
2. Currently, there are 3 stem cell studies for Autism where the Duke Team is involved: a) Using cord tissue MSCs (where 500-1,000 doses could be extracted from a single cord and therefore multiple infusions could be received) with 4-to-7 year olds with NVIQ > 70 (with NVIQ measured at Duke as opposed to remotely in order to -hopefully- ensure statistical significance next time). b) A study in China aiming at diagnosing and treating Autism using cord-tissue infusions earlier in life. c) A small trial with ASD adults ages 18 to 35. These 3 trials are already funded but currently on hold due to COVID-19 but are expected to resume ASAP. Dr. Kurtzberg noted that in the future, it is possible that a combination of multiple stem cell sources could show higher efficacy than any individual source could achieve on its own, e.g. starting with a cord-blood infusion followed by cord-tissue MSCs infusions every 3-6 months to sustain benefits
3. In order to get FDA-approval for cord-blood infusions in the US, it is necessary to show definite benefit in a phase-III randomized placebo controlled trial. To that effect, the Duke Team believes that the results from the phase-II trial are compelling enough to seek funding for a phase-III trial with cord blood infusions in 4-to-7 year olds with NVIQ > 70. (As a side note, limiting the sample to 4-7 y.o. with NVIQ > 70 does not mean that lower functioning children could not benefit from cord-blood infusions, that is simply to delineate the inclusion criteria that is most likely to demonstrate benefits in the shortest amount of time)
4. During the course of the phase-II trial, the vast majority of parents who « guessed » when their children had received the cord-blood infusion (as opposed to the placebo) based on the improvements they observed in behaviors, focus, concentration, socialization, testing and communication (by ether increasing their vocabulary or by appropriately using the words they had) were correct. OTOH, The placebo effect was reportedly higher than expected, part of the reason why this could have happened was due to the tools used to assess improvements in 2-to-4 year olds, specially given the fact that this is an age where children in general could potentially acquire various skills
5. In principle, it is possible to get FDA-approval for an expanded access program using donor cord-blood infusions for children with Autism. However, the waiting list for the autologous infusions already surpasses the capacity of the Team at Duke. That said, Duke is currently working with a few other clinics/centers/hospitals to open up expanded access programs around the US (e.g. MD Anderson, Rutgers, etc.) that can provide access to cord-blood infusions without the long waiting lists
6. Although MSCs can be manufactured from adipose tissue or from the bone marrow, based on several studies, Dr. Kurtzberg believes MSCs from umbilical cord tissue are more potent. That said, studies using MSCs using bone marrow have also shown positive outcomes in Autism. Dr. Kurtzberg mentioned exosomes are controversial and have not been studied as much as MSCs. MSCs activate macrophages so the use of exosomes without MSCs may not cause the kind of benefits compared to when MSCs are present
7. Regarding prep work, the research Team has not found any indication that diets, supplements or other biomedical treatments can increase that chance of success from stem cell therapy
8. In theory, infusing HLA-matched (or partially HLA-matched) cord-blood in a recipient should increase the amount of time that the donor cells can survive in the recipient’s body. Also, by infusing HLA-matched cord blood there is less chance of « sensitizing » the recipient’s system against foreign HLA which could potentially make the recipient develop antibodies that could limit the donor base later in life if transfusions were needed for other reasons
« In a subanalysis of children without intellectual disability (ID), allogeneic, but not autologous, CB was associated with improvement in a larger percentage of children on the clinician-rated Clinical Global Impression-Improvement scale”
And: “Children without ID treated with CB showed significant improvements in communication skills (VABS-3 Communication Domain), and exploratory measures including attention to toys and sustained attention (eye-tracking) and increased alpha and beta electroencephalographic power.”
“The rationale is that CB CD14+ monocytes act through paracrine signaling to modulate brain inflammation and/or immune abnormalities, improving brain function and behavior.”
“One hundred eighty children, aged 2-7 years (mean ± SD, 5.47 ± 1.65) who met DSM-5 criteria for ASD participated. Diagnosis was based on the Autism Diagnostic Observation Schedule-217 and Autism Diagnostic Interview, Revised.18 Participants were screened for a genetic cause of ASD with testing for Fragile X and chromosomal microarray. Inclusion criteria included (1) negative genetic testing, (2) qualified CB unit with a minimum banked total nucleated cell dose of ≥2.5 × 107 cells/kg or ≥4/6 HLA-matched allogeneic unrelated CB unit, (3) stable on medications for ≥2 months, (4) ability to travel to study site twice, (5) English speaking, and (6) normal absolute lymphocyte count (≥1500/μL).”
But : “Infused dose was not associated with the primary and secondary outcomes, with the exception of the CGI. The allogeneic cohort received a higher TNC dose compared with the autologous cohort (3.8 × 107/kg vs 2.7 × 107/kg) making it impossible to determine whether the effect in the allogeneic group was due to the higher cell dose or to CB type.”
“When participants with NVIQ ≥70 were analyzed separately, the results indicated that participants without ID who were treated with CB exhibited significantly increased relative alpha powerposterior/toys (P = .02) and significantly increased relative beta1 powerall brain regions/social (P = .02) compared with the placebo group (Figure 5). No main effects were found for theta or gamma power.”
“However, for children without ID, clinician CGI ratings indicated that children treated with allogeneic CB, but not those treated with autologous CB, showed improvement over placebo. Children without ID also showed significantly greater improvement in a prespecified secondary outcome measure of VABS Communication SS when treated with CB compared with placebo.”
Denise Serigny my mother in law send me her testimonial for EXO: (she does not have Facebook now) and she is 78 years old!
But this is her experience after 6 months:
“What a pleasure to put on my face, morning and evening, this little drop of EXO.
Immediately i felt my skin becomes “full” of this elixir and in a few seconds nourishes and beautifies it.
I always thought, that i will become “old » in natural way… I would never resort to cosmetic surgery, I want to keep on my face the traces of my history.
EXO, suits me fully : gradually reducing fine wrinkles and slightly filling the skin , giving it a « healthy glow » effect.”
A lot of friends ask me how to maintain youth and look good at my age (I’m 46 on the left of photo) …so ….honestly, I think several factors play a role …
Of course genetics; nutrition and physical activity … but for the skin …. not only …. my friends often ask me what cream I use …. I honestly did not use any;) before….but recently we drove to treat our son brain injury in Samara and there I found a cream on a natural basis – based on exosomes ….from umbilical cord blood .. (I studed a lot of scientific literature on umbilical cord blood as you can find in previous articles on my blog….for my son and therefore I know a lot about its capabilities) therefore it was this serum with exosomes that I personally was interested to give a try and honestly the result on my face became already visible after 2 months!
I can testify that after 8 months of treatment an excellent result on my face skin really great some wrinkles are less visible (but the result is absolutely natural) not like the stretched and inflated faces of Botox stars …oh … the horror … 😂
I am 46 years old, and I am very pleased with EXO serum, it is effective, soft and natural – and, in my opinion, it is ideal (I am not a supporter of Botulique toxins and not a supporter of plastic surgeries – I consider this exagération – in pursuit of “rejuvenation” and results …. haw to say – better to use in horror films- very unnatural and doubtful …. and it could harm your health ! Botox can harm you it’s toxic…..
Of cause at the same time, as any woman I’m looking for a way to stay attractive – but as “natural” as possible and therefore I personally really like EXO Serum.
It should be noted that this is not just external beauty, but also real skin health and restoration of skin functions! So very very healthy !!!!
Exosomes of umbilical cord mesenchymal cells have proven effective for skin rejuvenation in preclinical studies by a group of scientists from the USA and China. Experiments have shown that exosomes can potentially be used to regenerate and rejuvenate the skin with various defects. The work was published in ACS Omega magazine:
Exosomes have the ability to stimulate the proliferation of dermal fibroblasts, as well as enhance their production of collagen, elastin and fibronectin.
As I wrote earlier, EXO underwent research in Samara for burns and healing wounds.
The purpose of Israel’s study is to evaluate the efficacy of HBOT in moderate-severe COVID-19 patients in a randomized controlled manner.
This Swiss study and also some studies in USA ( with hbot) still makes me think that hbot may be good therapie for COVID19 patients :
I will explain
Hère Swiss last study: ( published in Lancet)
This is new interesting study:
« The endothelial tissue of younger patients is usually capable of coping well with the attacks launched by the virus. The situation is different for patients suffering from hypertension, diabetes, heart failure or coronary heart diseases, all of which have one thing in common – their endothelial function is markedly impaired. If patients such as these become infected with SARS-COV-2, they will be particularly at risk, as their already weakened endothelial function will diminish even further, especially during the phase in which the virus reproduces the most. «
Endothelial dysfunction And capacity to produce nitric oxide (NO)….
And we have a lot of studies ( with hbot) One of them Shai study:
« In a study on rats with normal mitochondrial function, HBOT increased the production of adenosine triphosphate in muscle tissue compared to a control group [29]. Moreover, in a clinical study by Li et al., it was demonstrated that HBOT may improve myocardial blood perfusion, reduce inflammation and vascular endothelial dysfunction, and further improve myocardial microcirculation in patients after the implantation of drug-eluting stents [30]. Aparci et al. evaluated the changes following a series of 10 hyperbaric sessions in diabetic patients [31] »
So if HBOT improve myocardial blood perfusion, reduce inflammation and vascular endothelial dysfunction we are searching improve level of NO ( in all types cardiac patients) so I think for such category of patients may be hbot could be used even before any COVID19 infection ?.. ( may be than if their capacity to produce nitric oxide (NO)will be normalise or almost) we will see much more less cardiac person with bad Covid 19 outcome ????
