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expatimes · 4 years

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A geneticist’s biggest challenge: Curing his own son

Palo Alto, California – Whitney Dafoe’s day begins at 2:30pm. His father, Ron Davis, peeks through the keyhole into the 37-year-old’s room. Is he awake?

ABSOLUTELY NO ENTRY is scrawled in red on a handmade sign pinned to the door below a picture of the Dalai Lama. Davis has rushed home from Stanford University in Palo Alto, California, to take the afternoon shift. When Whitney raises his left hand, fingers clenched to a fist, that’s Davis’s cue. Whitney is ready for his dad to change his diapers, put ice on his aching belly, and refill the IV-drip.

Davis’s shift ends at 6pm when his wife, Janet Dafoe, takes over. Dafoe, a child psychologist, carefully attaches a bag filled with liquid nutrients to her son’s j-tube because he cannot digest solid food. She will also take the night shift, so her 79-year-old husband can return to Stanford to work on the task that’s been governing his life for years: finding a cure for his son.

Whitney was diagnosed in 2010 with myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), a complex illness that leads to debilitating exhaustion, brain fog, insomnia and neurocognitive impairments. Any physical or mental effort aggravates the fatigue. He has been mostly bedridden for the last 10 years and has not spoken a word since Christmas 2014. He only communicates via pantomime or by typing short messages into his tablet. In one of his texts several years ago, Whitney typed, “Chronic fatigue sounds too banal. I call it total body shutdown.” He added an apology to his parents: “I am sorry I’m ruining your golden years.”

At about 190cm (6-foot-3), Whitney weighs a little over 45kg (100lbs). His head is shaved, his figure emaciated. Filmmaker Jennifer Brea (Unrest), a fellow ME/CFS patient, compares the illness to “a broken battery” that can only charge to five percent. Nobody has been able to identify a single cause. There are no standard diagnostic tests and no cures, doctors can only rule out other illnesses such as multiple sclerosis (MS) or cancer.

The National Academy of Sciences estimates that up to 2.5 million Americans suffer from ME/CFS, and an estimated 84 to 91 percent of people with ME/CFS are not diagnosed. The World Health Organization lists ME/CFS as a neurological illness, but Davis is convinced he’s confronting an autoimmune disorder, not unlike MS. Like many autoimmune disorders, it disproportionately affects women. His research became especially urgent after Dr Anthony Fauci, the top infectious disease expert in the US, warned that the novel coronavirus could cause ME/CFS.

“CFS is probably the last major illness we need to figure out,” says Davis, who speaks with a voice so tender everyone around him immediately lapses into silence so they can understand his words. “I feel the tremendous weight to find a solution.”

Whitney Dafoe, 37, who has chronic fatigue syndrome, weighs little more than 45kg

A problem solver

Davis, the director of the Stanford Genome Technology Center, has solved complex puzzles before. It’s something he has enjoyed since childhood when he would build model rockets, persevering despite being told by teachers that he would never amount to much because of his dyslexia.

He later developed one of the first methods for mapping DNA in 1967. In his 50-year career as a biochemist and geneticist, he has also worked with Nobel laureate James Watson at Harvard, created the first image of the pairing of two genomes, and made crucial contributions to the Human Genome Project.

I’ve always found tremendous joy in solving problems that others deem unsolvable.

Ron Davis

In 2013, Atlantic magazine counted him as one of “today’s greatest inventors.”

“I’ve always found tremendous joy in solving problems that others deem unsolvable,” he says in the foyer of his house, but the joy drains from his face when he stops at his son’s door. “My greatest hope is that we find the cause.”

Whitney, before he became ill with ME/CFS

‘When Ron calls, we come’

Whitney was an award-winning photographer with a keen, meditative eye. The lanky, curly-headed adventurer explored all 50 states and nearly all continents with his camera. He lived with a shaman in Ecuador, discovered the Himalayas on the back of his motorcycle, and helped build a nunnery in India. Like many CFS-patients, his breakdown started with an infection: In 2007, he went to a clinic in India with a fever and bloody diarrhoea. When the doctors there could not help him, he booked the next flight home to California.

But despite innumerable doctor visits, he kept getting weaker. In 2009, he took photos of then-President Barack Obama’s inauguration but already could not work full days anymore. He tried keeping up with wedding photo assignments, but it would take him an entire week to recover.

“First he couldn’t carry his shopping bags anymore, then he became too weak to cook, so in May 2011, he moved back in with us because he didn’t have the energy anymore for the simplest everyday things,” Janet Dafoe recalls. “At first, we couldn’t understand why he was always so tired. Then, we thought, OK, who are the specialists? At which clinic can we get help? We tried absolutely everything the doctors recommended.” She runs down a long list of medications, antidepressants, cancer remedies, MS supplements. “Until we realised: Nobody knows how he can get healthy again.”

That is when Davis came to a decision: “I have to do it.”

Whitney’s state is comparable to an AIDS patient about a week before his death. And that has been the case for the last six years.

Ron Davis

The words of the doctor who finally diagnosed his son with ME/CFS burned themselves into his memory: “The good news is, he won’t die from it. The bad news is, he won’t die from it.” But the truth is that any further infection, for instance from his feeding tube, could be the end.

Davis understands his race for a cure as a race against the death of his son. “Whitney’s state is comparable to an AIDS patient about a week before his death. And that has been the case for the last six years,” Davis says. At one point, Whitney spelled D Y I N G with scrabble tiles.

In 2013, Davis founded the Stanford Chronic Fatigue Syndrome Research Center (now called ME/CFS Collaborative Research Center). In his labs, centrifuges churn with the blood of dozens of severe ME patients, including his son. A geneticist colleague is sequencing their genes as a favour.

“There are still doctors who send these patients to a psychiatrist,” Davis laments. “If a general practitioner analyses Whitney’s blood, they get near-normal results. Therefore doctors think the illness is in their head.” But when he explored further, Davis detected anomalies. After more than 9,000 experiments, Davis has proven that Whitney’s blood is thicker and stickier. When he exposes the blood of healthy people to a stressor such as salt, it will soon revert back to normal, whereas the blood conductivity of CFS patients collapses. Davis has developed four diagnostic tools he is currently testing and believes he will soon be able to announce a breakthrough in confirming biomarkers.

Ron Davis, one of the world’s leading geneticists, is focused on finding a cure for his son

But Davis’s deeply personal fight for his son’s health is also a battle for the recognition of this illness. The National Institutes of Health spent only about $15m in 2019 on ME/CFS research, which affects up to 2.5 million Americans. It spent about $111m on MS research, which affects about one million people.

Luminaries from all over the world have joined Davis’s research and flew in for the last pre-pandemic CFS Symposium at Stanford in September 2019: Robert Phair, a former Johns Hopkins School of Medicine professor, has seen interrupted metabolism in patients; top surgeon Ron Tompkins established a CFS research collaboration at Harvard University; Maureen Hanson, professor of molecular biology at Cornell University who was motivated to join the efforts by a family member with CFS, has focused her research on the microbiome of patients’ gut and blood; neuroscientist Jonas Bergquist who travelled from Uppsala University, in Sweden, where he started a research centre on ME/CFS.

Stanford geneticist Mike Snyder summed up what many of them think: “When Ron calls, we come.” They all acknowledge his brilliant mind and work ethic, and complain about the lack of funding to study this complex disease.

With Davis’s help, the Open Medicine Foundation, which leads the largest non-profit effort to diagnose, treat and prevent ME/CFS and related chronic, complex diseases, raised more than $18m in 2019 and was on track to raise another $20m in 2020. Davis, who is the director of OMF’s scientific advisory board, has such a stellar reputation among scientists that he was able to convince numerous renowned researchers at Ivy League universities to contribute to his work, including Nobel Laureates Paul Berg and Mario Capecchi.

They have made progress: Neurologists found inflammatory changes in the brain; immunologists suspect an error response in the immune system; and geneticists point to a genetic marker for CFS that up to three-quarters of people may have. “It’s like looking at an elephant,” Davis jokes. “One is checking out the trunk, another the legs, and a third the ears. Everybody finds something in their area.”

Whitney has not said a word since Christmas, 2014

ME/CFS and COVID-19

Davis’s research became even more urgent and important after Dr Fauci warned that some COVID survivors showed symptoms in line with those of ME/CFS. “This is a phenomenon that is really quite real and quite extensive,” Fauci said at the federal government’s first conference on “COVID long haulers” in early December, calling it “a significant public health issue”.

According to Fauci, “a considerable number” of COVID survivors struggle with extreme exhaustion, memory lapses, and cognitive difficulties many months after they have been officially cleared as recovered.

Davis is part of a high-level interagency work and research group (PDF) looking at the long-term consequences of COVID with the Centers for Disease Control and Prevention (CDC), National Institutes of Health, the Veterans Administration, and the Department of Defense.

This could be a turning point to figuring out how ME/CFS gets triggered and how to stop it before it starts.

Whitney Dafoe

He launched the first study into long-term molecular changes in COVID patients and he is years ahead in his research on why some patients cannot recover easily after a severe viral infection.

“This could be a turning point to figuring out how ME/CFS gets triggered and how to stop it before it starts,” Whitney typed in a text shared by his parents. “They are taking blood from coronavirus patients and monitoring their progress so they can see, in real-time, the transition from coronavirus to ME/CFS.”

‘Superman’

In the early years, Whitney was still able to work with a physiotherapist. “Now he can’t tolerate strangers in the room. Everything is too much.” Janet Dafoe sighs. She reduced her therapy hours and her husband reorganised his institute so they can care for Whitney around the clock. Sometimes, a nurse takes over the night shift, but the family cannot afford constant care. “Many ME/CFS-patients have a warped night-day rhythm,” Janet Dafoe explains why she often stays with her son until 5am. They have tried in vain to find a different rhythm. “Whitney hardly sleeps more than two hours a night, and nobody knows why.”

Ron Davis and Janet Dafoe

Just like the virus took over their son’s body, it has also brought his parents’ lives to a standstill. “Our life is stuck in a holding pattern,” Janet Dafoe acknowledges. “Doing my PhD was hard. I conquered mountains, that was hard. But living with my son’s illness is a thousand times harder. Our entire world has been eaten up by a chronic disease.”

Last July, Davis and Dafoe celebrated their 50th wedding anniversary. They met at the California Institute of Technology (Caltech) when she was a budding child psychologist, he a geneticist who had already garnered the first of his 30 patents. They immediately connected over their shared interests: hiking, nature, Indigenous American wisdom. They used to enjoy mountain tours, trips to the Sierra mountain range, and visits with Native American shamans. But their travel together has all but ceased as at least one of them always stays close to their son. They still have a traditional sweat lodge in their lush garden, Janet Dafoe’s greatest pride.

“Because we can’t travel anymore, I take care of the garden, so we at least have a nice place here,” Janet Dafoe says, her grey curls framing her face. Tibetan prayer flags flutter above the pillars of their elegant single-family home in Professorville in the heart of Palo Alto, a reminder of Whitney’s Buddhist faith.

This is a devastating, really serious disease that affects many body systems. It will completely knock you out, it will ruin your life and the lives of people who take care of you. It can affect anyone if they just get the wrong virus or the wrong environmental stress.

Janet Dafoe

In the hallway leading to Whitney’s room, Whitney and his younger sister, Ashley Haugen, smile from framed photos, taken in happier times, their toddler selves dancing hand-in-hand. Ballet used to be Ashley’s passion; now she is an event manager and new mother.

In 2011, after Whitney first fell ill, his sister took care of him for a full year. But she burned out. “He was my best friend,” she says. “It is hard to find someone who knows you as well as your brother.”

Her parents invited friends and colleagues to their Palo Alto home on this pre-pandemic afternoon the day after the conference, including a dozen patients with milder ME who are strong enough to leave the house. For 20 years, Janet Dafoe worked full-time at the Children’s Health Council in Palo Alto, then the last 15 years at the Morrissey Compton Educational Center in Redwood City, mainly counselling children with Aspergers and autism. Instead of taking care of her own psychology patients, she now spends many hours a day comforting other ME/CFS patients. “I try to show them that they are not alone. I am busy every day to prevent suicides,” the mild-mannered Janet Dafoe says, then her tone changes and she speaks of increasing despair.

Whitney and Ashley when they were children

“This is a devastating, really serious disease that affects many body systems. It will completely knock you out, it will ruin your life and the lives of people who take care of you. It can affect anyone if they just get the wrong virus or the wrong environmental stress,” she adds. “They should all be up in arms that the research isn’t funded better so we can figure this out! Instead, some doctors are still telling patients to simply man up or exercise. They are basically committing malpractice. It’s absolutely mind-blowing.”

Of course, many patients are depressed and anxious, she says, “because so much has been taken away from them. But that doesn’t mean the illness is in their head. You would be depressed, too, if you couldn’t do most of the things you used to do, and nobody knows how you can be helped.”

She tries to retrieve her sense of humour, recounting one of her last conversations with her son several years ago. He was worried he would not be able to find a wife. “’They’ll all be taken by the time I’m recovered,’” Janet Dafoe smiles as she remembers his words.

“I told him finding a girlfriend for him will be the easiest problem to solve.”

Everything can change in a moment. You never know what will happen in the future. Never stop fighting. I'm fighting with you. If you feel like giving up, give it to me. I will carry it for you.

Whitney Dafoe

This year, Whitney’s energy has improved a little with experimental medication. For the first time in years, he can type longer texts into his tablet, opening a window into his isolated inner world. When Dafoe asked her son if he had a message for other CFS patients, Whitney closed his eyes, focused, and wrote a few lines: “Everything can change in a moment. You never know what will happen in the future. Never stop fighting. I’m fighting with you. If you feel like giving up, give it to me. I will carry it for you.”

Janet Dafoe had the lines printed on posters, with a picture of Whitney’s raised left fist, photographed through the keyhole of his room.

It’s a fight his parents have vowed to never give up either. Davis’s book with award-winning journalist Tracie White, The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son, hits bookshelves this month. It paints an intimate portrait of Whitney’s journey to diagnosis and his father’s fight to find a cure.

Whitney, with his parents and sister, who have taken care of him at different times since he fell ill in 2010

Sitting in the garden, Davis keeps checking his mobile phone until it tells him it is time for the next feeding. He promptly gets up to mix a second helping of nutrient powder for his son.

When Davis returns from feeding his son, his face is crumpled by exhaustion. “I’ve got to sit down,” he says. Both father and son have Ehlers-Danlos syndrome, which causes joint pain and fatigue. Davis started suffering from rheumatic fever as a one-year-old toddler, was often bedridden for weeks as a child; he lives with chronic pain every day. “I’m used to pain,” he says flatly. “You just rewire your brain to ignore it.”

It was precisely his childhood experience with medicine that ignited his passion for science. When a doctor gave him penicillin for the first time, instantly erasing his fever, the child thought medicine was a miracle and vowed to study it from then on. “His whole life prepared him for the task of saving his son,” Janet Dafoe comments. “Whitney truly believes dad is superman.”

The book The Puzzle Solver, co-written by Ron Davis and Stanford science writer Tracie White, will be published January 5, 2021, by Hachette.

#technology Read full article: https://expatimes.com/?p=16320&feed_id=26392 #coronaviruspandemic #features #health #scienceandtechnology #unitedstates #usampcanada

#Coronaviruspandemic #Features #Health #ScienceandTechnology #UnitedStates #USampCanada

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ocgreenrelief · 7 years

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New Post has been published on

New Post has been published on https://ocgreenrelief.org/antidepressant/caution-understanding-endocannabinoid-system-might-change-life

Caution: understanding the Endocannabinoid System might change your life!

BY VIOLA BRUGNATELLI · PUBLISHED MAY 5, 2015 · UPDATED OCTOBER 23, 2017

Highlights:

The endocannabinoid system is the most important physiologic system involved in establishing and maintaining human health Sea squirts, tiny nematodes, and all vertebrate species share the endocannabinoid system as an essential part of life and adaptation to environmental changes Currently, there are two recognised cannabinoid receptors: CB1, predominantly present in the nervous system, connective tissues, gonads, glands, and organs; and CB2, predominantly found in the immune system and its associated structures Endocannabinoids are the substances our bodies naturally make to stimulate these receptors Phytocannabinoids are plant substances that stimulate cannabinoid receptors

Contents of this article:

1) What is the Endocannabinoid System?

2) What are Cannabinoid Receptors?

3) What’s an endocannabinoid?

4) Synthetic Cannabinoids

5) Support & Copyright

The endocannabinoid system, named after the plant that led to its discovery, is the most important physiologic system involved in establishing and maintaining human health.

“As a physician, I am naturally wary of any medicine that purports to cure‐all.

Panaceas, snake‐oil remedies, and expensive fads often come and go, with big claims but little scientific or clinical evidence to support their efficacy.

As I explore the therapeutic potential of cannabis, however, I find no lack of evidence.

In fact, I find an explosion of scientific research on the therapeutic potential of cannabis, more evidence than one can find on some of the most widely used therapies of conventional medicine. “

Dustin Sulak, DO Maine Integrative Healthcare

What is the Endocannabinoid System? The endogenous cannabinoid system, named after the plant that led to its discovery, is perhaps the most important physiologic system involved in establishing and maintaining human health. Endocannabinoids and their receptors are found throughout the body: in the brain, organs, connective tissues, glands, and immune cells.

In each tissue, the cannabinoid system performs different tasks, but the goal is always the same: homeostasis, the maintenance of a stable internal environment despite fluctuations in the external environment. Cannabinoids promote homeostasis at every level of biological life, from the sub‐cellular, to the organism, and perhaps to the community and beyond. Hereʹs one example: autophagy, a process in which a cell sequesters part of its contents to be self‐digested and recycled, is mediated by the cannabinoid system.

While this process keeps normal cells alive, allowing them to maintain a balance between the synthesis, degradation, and subsequent recycling of cellular products, it has a deadly effect on malignant tumor cells, causing them to consume themselves in a programmed cellular suicide.

The death of cancer cells, of course, promotes homeostasis and survival at the level of the entire organism.

Find out better how cannabinoids are effective anti-tumoral agents and what therapy could assist you to fight cancer.

Endocannabinoids are also neuromodulators, allowing communication and coordination between different cell types.

At the site of an injury, for example, cannabinoids can be found

decreasing the release of activators and sensitizers from the injured tissue stabilizing the nerve cell to prevent excessive firing calming nearby immune cells to prevent release of pro‐inflammatory substances Three different mechanisms of action on three different cell types for a single purpose: minimize the pain and damage caused by the injury.

Check out why cannabinoids are the best option for chronic pain, neuropathic pain or inflammatory pain.

What are Cannabinoid Receptors? Sea squirts, tiny nematodes, and all vertebrate species share the endocannabinoid system as an essential part of life and adaptation to environmental changes.

By comparing the genetics of cannabinoid receptors in different species, scientists estimate that the endocannabinoid system evolved in primitive animals over 600 million years ago.

While it may seem we know a lot about cannabinoids, the estimated twenty thousand scientific articles have just begun to shed light on the subject.

Large gaps likely exist in our current understanding, and the complexity of interactions between various cannabinoids, cell types, systems and individual organisms can still offer novel ways to look at physiology and health.

The following brief overview summarizes what we do know, ( without getting over specific with terminology and mechanisms otherwise pedantic for general public)

Cannabinoid receptors are present throughout the body, embedded in cell membranes, and are believed to be more numerous than any other receptor system.

endocannabinoid system activation signalling

When cannabinoid receptors are stimulated, a variety of physiologic processes ensue. Currently, there are two recognised cannabinoid receptors: CB1, predominantly present in the nervous system, (is the most abundant G-protein coupled receptor of the CNS) connective tissues, gonads, glands, and organs; and CB2, predominantly found in the immune system and its associated structures. Many tissues contain both CB1 and CB2 receptors, each linked to a different action. There are many researchers (like myself and many others investigating novel receptors), speculating on a larger number of cannabinoid receptors, such as GPR55, that are also sensitive to lipid cannabinoids. What is important to understand for the purpose of this article, is that endocannabinoids are the substances our bodies naturally make to stimulate these receptors, and that these are fundamental for life.

Life is not possible in those of us who do not have cannabinoid receptors: in fact, depleting the gene encoding receptor sequence (in order to obtain a cannabinoid knockout KO -/-), prevents embryo development and survival to birth.

What’s an endocannabinoid? The two most well understood endocannabinoid molecules are called anandamide (from Sanskrit, bliss) and 2‐arachidonoylglycerol (2‐AG). They are synthesized on‐demand from cell membrane arachidonic acid derivatives, have a local effect and short half‐life before being degraded by the enzymes fatty acid amide hydrolase (FAAH) and monoacylglycerol lipase (MAGL).

Chemically, endocannabinoids are eicosanoids (oxidised fatty acids) and for this reason during the International Cannabinoid Research Society symposium of 2014 at Baveno, Italy, it has been proposed to change the nomenclature of “endocannabinoids” to “eicosanoids” in order to prevent stigma for therapies that target the cannabinoid system, but clearly lack of the cannabis component. (This change has never taken place yet).

Phytocannabinoids are plant substances that stimulate cannabinoid receptors.

Most phytocannabinoids have been isolated from Cannabis sativa, but other medical herbs, such as Echinacea purpura, have been found to contain non‐psychoactive cannabinoids as well.

Delta‐9‐tetrahydrocannabinol, or THC, is the most psychoactive and certainly the most famous of these substances, but other cannabinoids such as cannabidiol (CBD) and cannabinol (CBN) and cannabinoid acids (THCA), are gaining the interest of researchers due to a variety of healing properties (that are further discussed here).

Interestingly, the Cannabis plant uses cannabinoids to promote its own health and prevent disease.

Cannabinoids have antioxidant properties that protect the leaves and flowering structures from ultraviolet radiation ‐ cannabinoids neutralize the harmful free radicals generated by UV rays, protecting the cells. In humans, free radicals cause aging, cancer, and impaired healing, which can lead to a variety of pathologies, from neurodegenerative to immune disorders. Antioxidants found in plants have long been promoted as natural supplements to prevent free radical harm. (Here you will find many antioxidant-rich recipes to include in your diet)

Synthetic Cannabinoids Cannabinoids have also been synthesised, and whilst some remain mainly in the research domain (Usually those with long codes-like letters and numbers), several synthetic analogs of THC or THC+CBD combination are both prescribed for oral or sublingual intake. (We have a guide on these kind of products) CBD or Raw CBD (+CBDa) is available in many Countries as food supplement due lack of restrictive prescriptions on non-psychoactive compound. (However, we recommend you to check certification of providers (as we outlined in this article: “The importance of Cannabinoid Analysis”, and if you are unsure get in touch with our team for consulting)

If you are interested to know which Countries approve medical use of these cannabinoids, and what phathologies have been authorized prescription, I suggest you to check here or watch this video.

In order to understand whether whole plant or single compound may be better for you, please read here.

This introduction to the Endocannabinoid System has been written thanks to the brilliant yearly review of recent scientific literature of “Emerging clinical applications of cannabis and cannabinoids” , by Paul Armentino, Deputy Diector of NORML (Check and support their work if you read from the States!) , they have a gift for concise and educational summary and I felt it was the best approach (compared to the peer-reviewed publication model I often adopt), in order to introduce the basics of the Endocannabinoid System.

All the information is indeed coming from an extensive work of review on the 15,899 articles on PubMed related to cannabinoids NORML does yearly, as well as a very interesting speech by Dr William Courtney during the ICRS 2014 annual symposium (check out his and his wife’s pioneering work with edible raw cannabis here) and my own understanding from previous years of studies and work on the topic.

If you want to delve in the topic, stay tuned for 2017 new articles either by signing in through the newsletter (I promise that you only receive a lovely once a month email, so no cluttering your inbox) or following us through the Facebook page or YouTube. I am happy to read your comments and suggestions for new insights, so just leave them below.

Spread consciousness and smile more!

Nature Going Smart – SupportDid you like this article on the endocannabinoid system?

This original content has been offered for free without advertisements thanks to our readers’ contributions. You, too, can support us in many ways. Check out how here! Thank you

#antidepressant #Autism #Cannabinoids #cannabis #Cannabis Oil #CBD #Endocannabinoid System #endocannabinoid system (ECS)#Entourage #healing #Health #Homeostasis #Medicine #Research

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neuro-psych-faq · 7 years

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Fetal exposure to excessive stress hormones in the womb linked to adult mood disorders

Exposure of the developing fetus to excessive levels of stress hormones in the womb can cause mood disorders in later life and now, for the first time, researchers have found a mechanism that may underpin this process, according to research presented April 7 at the British Neuroscience Association Festival of Neuroscience (BNA2013) in London.

The concept of fetal programming of adult disease, whereby the environment experienced in the womb can have profound long-lasting consequences on health and risk of disease in later life, is well known; however, the process that drives this is unclear. Professor Megan Holmes, a neuroendocrinologist from the University of Edinburgh/British Heart Foundation Centre for Cardiovascular Science in Scotland (UK), will say: “During our research we have identified the enzyme 11ß-HSD2 which we believe plays a key role in the process of fetal programming.”

Adverse environments experienced while in the womb, such as in cases of stress, bereavement or abuse, will increase levels of glucocorticoids in the mother, which may harm the growing baby. Glucocorticoids are naturally produced hormones and they are also known as stress hormones because of their role in the stress response.

“The stress hormone cortisol may be a key factor in programming the fetus, baby or child to be at risk of disease in later life. Cortisol causes reduced growth and modifies the timing of tissue development as well as having long lasting effects on gene expression,” she will say.

Prof Holmes will describe how her research has identified an enzyme called 11ß-HSD2 (11beta-hydroxysteroid dehydrogenase type 2) that breaks down the stress hormone cortisol to an inactive form, before it can cause any harm to the developing fetus. The enzyme 11ß-HSD2 is present in the placenta and the developing fetal brain where it is thought to act as a shield to protect against the harmful actions of cortisol.

Prof Holmes and her colleagues developed genetically modified mice that lacked 11ß-HSD2 in order to determine the role of the enzyme in the placenta and fetal brain. “In mice lacking the enzyme 11ß-HSD2, fetuses were exposed to high levels of stress hormones and, as a consequence, these mice exhibited reduced fetal growth and went on to show programmed mood disorders in later life. We also found that the placentas from these mice were smaller and did not transport nutrients efficiently across to the developing fetus. This too could contribute to the harmful consequences of increased stress hormone exposure on the fetus and suggests that the placental 11ß-HSD2 shield is the most important barrier.

“However, preliminary new data show that with the loss of the 11ß-HSD2 protective barrier solely in the brain, programming of the developing fetus still occurs, and, therefore, this raises questions about how dominant a role is played by the placental 11ß-HSD2 barrier. This research is currently ongoing and we cannot draw any firm conclusions yet.

"Determining the exact molecular and cellular mechanisms that drive fetal programming will help us identify potential therapeutic targets that can be used to reverse the deleterious consequences on mood disorders. In the future, we hope to explore the potential of these targets in studies in humans,” she will say.

Prof Holmes hopes that her research will make healthcare workers more aware of the fact that children exposed to an adverse environment, be it abuse, malnutrition, or bereavement, are at an increased risk of mood disorders in later life and the children should be carefully monitored and supported to prevent this from happening.

In addition, the potential effects of excessive levels of stress hormones on the developing fetus are also of relevance to individuals involved in antenatal care. Within the past 20 years, the majority of women at risk of premature delivery have been given synthetic glucocorticoids to accelerate fetal lung development to allow the premature babies to survive early birth.

“While this glucocorticoid treatment is essential, the dose, number of treatments and the drug used, have to be carefully monitored to ensure that the minimum effective therapy is used, as it may set the stage for effects later in the child’s life,” Prof Holmes will say.

Puberty is another sensitive time of development and stress experienced at this time can also be involved in programming adult mood disorders. Prof Holmes and her colleagues have found evidence from imaging studies in rats that stress in early teenage years could affect mood and emotional behaviour via changes in the brain’s neural networks associated with emotional processing.

The researchers used fMRI (Functional Magnetic Resonance Imaging) to see which pathways in the brain were affected when stressed, peripubertal rats responded to a specific learned task. [1].

Prof Holmes will say: “We showed that in stressed ‘teenage’ rats, the part of the brain region involved in emotion and fear (known as amygdala) was activated in an exaggerated fashion when compared to controls. The results from this study clearly showed that altered emotional processing occurs in the amygdala in response to stress during this crucial period of development.”

Abstract title: “Perinatal programming of stress-related behaviour by glucocorticoids.” Symposium: “Early life stress and its long-term effects – experimental studies.”

#trauma and stressor related disorders #study

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biofunmy · 5 years

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CRISPR Mice From China Could Help Save This Toddler From A Rare Genetic Form Of Epilepsy

When Amber Freed first told doctors her baby boy wasn’t able to move his hands, they said that wasn’t possible.

Freed had given birth to twins in March 2017. While her baby girl, Riley, squirmed and babbled and crawled through the first year of her life, her fraternal twin, Maxwell, was different. He didn’t crawl or babble like Riley did. “I would fill out their baby books each month, and Riley had met all of these milestones. Maxwell didn’t reach one,” she said. Most alarmingly, however, Freed noticed that he never moved his hands.

She knew the news was going to be bad when they sent her to the “sad room” at the hospital, a featureless conference space filled with grim-faced doctors, to hear the diagnosis.

“You take your baby to the doctor and you say, ‘He can’t move his hands.’ And they look at you and they say, ‘Of course he can,’” said Freed.

“Then they look for themselves, and you can see from the look on their faces that they have never seen anything like this.”

On June 14, 2018, at the Children’s Hospital Colorado in Denver, Maxwell was diagnosed with a genetic disease called SLC6A1. The diagnosis explained why the infant hadn’t moved his hands or learned how to speak for the first year of his life, while Riley was thriving. But it didn’t explain much else: All the doctors who diagnosed Maxwell knew about the genetic disease came from a single five-page study published in 2014, the year of its discovery. It was too rare to even have a name, she was told, so the doctors just called it by the name of the affected gene: SLC6A1.

Now her 2½-year-old son is at the center of a multimillion-dollar race against time, one that’s come to include genetics researchers whom Freed personally recruited, paid for by $1 million that Freed and her husband, Mark, have raised themselves. At the center of their research will be specially crafted mutant mice that Freed paid scientists in China to genetically alter to have the same disease as Maxwell. The four mice are scheduled to arrive stateside next week, but Freed said she’s prepared to smuggle them into the US disguised as pets if there are any problems.

In total, Amber and Mark will need to raise as much as $7 million to test a genetic treatment for their child. And unless they can find — and fund — a cure, SLC6A1 will condemn Maxwell to severe epileptic seizures, most likely starting before he turns 3. The seizures may trigger developmental disabilities for a lifetime, often accompanied by aggressive behavior, hand flapping, and difficulty speaking.

And the Freeds will have to do it largely alone — there are only an estimated 100 other people diagnosed with SLC6A1 in the world. “This is the rarest of the rare diseases,” pediatric geneticist Austin Larson of the Children’s Hospital Colorado told BuzzFeed News.

SLC6A1 is just one of thousands of untreatable rare diseases, and the perilous path it has set up for Freed, half science quarterback and half research fundraiser, is one that few parents can follow. “My dream is to create a playbook of how I did this for those that come after me,” said Freed. “I never want there to be another family that has suffered like this.”

“You can think of SLC6A1 as a vacuum cleaner in the brain,” genetic counselor Katherine Helbig of the Children’s Hospital of Philadelphia, told BuzzFeed News. Helbig will speak at the first conference on the gene at the American Epilepsy Society meeting in Baltimore on Dec. 5, an effort organized by Freed.

The protein made by the gene acts as a stop sign to message-carrying chemicals in the brain, halting them by vacuuming them up once they reach their destination brain cell, Helbig explained.

When one of the two copies of the SLC6A1 gene in every brain cell is damaged, like in Maxwell’s case, too little of its protein is available to perform its vacuuming duties, leading to miscommunication between cells, developmental disorders, autism-like symptoms, and, often, severe epileptic seizures.

Maxwell is about the age when epileptic seizures typically start in kids with the genetic disease, said Helbig, adding, “There probably are many more children out there who have it, but they just haven’t had the right test to find it.” At least 100 similar genetic defects cause similar kinds of epilepsy, afflicting about 1 in 2,000 kids, she said.

“I was the one who presented this diagnosis to Amber,” said Larson of the Children’s Hospital Colorado. There was no medicine or diet or any other treatment for SLC6A1. It wasn’t an easy conversation. “Most of the time when we present a diagnosis for a genetic condition, there is not a specific treatment available.”

“At that moment, it was just vividly clear that the only option was for me to create our own miracle,” said Freed. “Nobody else was going to help.”

Half the battle with a rare genetic disease is getting researchers interested, said Helbig.

“At that moment, it was just vividly clear that the only option was for me to create our own miracle. Nobody else was going to help.”

So that is what Freed set out to do. She quit her job as a financial analyst and started making phone calls to scientists, calling 300 labs in the first three months. For those who didn’t respond, she sent them snacks via Uber Eats.

Her search, and a rapid-fire education on genetic diseases, led her to conclude the best hope for helping Maxwell was an experimental technique called gene therapy.

All the roads zeroed in on one scientist: Steven Gray of the University of Texas Southwestern Medical Center in Dallas. In 2018, a team headed by Gray reported the first human experiments of gene transfer by spinal injection, conducted in 5 to 10 children with mutations in a gene called GAN that causes swelling in brain cells.

The GAN gene transfer in that experiment, first tested in mice, attached a corrected version of the damaged gene to a harmless virus. Viruses reproduce by infecting cells and hijacking their DNA machinery to reproduce their own genes, making more viruses. The gene therapy virus in turn leaves behind a corrected gene in the DNA of cells they infect. Injected into the spinal cord, Gray’s virus can travel straight to the brain, leaving behind the corrected gene after the virus has run its course.

“I gave him my 30-second equity analyst pitch. I told him why Maxwell was a good patient, that we would raise $4 million to $7 million, and quarterback every step of the research,” she said. “And it worked. He agreed to make it a priority — if we could raise the money.”

Amber Freed

The SLC6A1 researchers with the Freeds at a science meeting. From left: Terry Jo Bichell, Frances Shaffo, Amber Freed, Katty Kang, and Mark Freed.

Less than a month after meeting Gray, Freed contacted a lab at Tongji University in Shanghai that was also researching SLC6A1. The lab agreed to develop a mouse with Maxwell’s specific mutation for less than $50,000, using a gene modification technology called CRISPR that has revolutionized genetic engineering in the lab. “CRISPR mice are much more expensive in the US, and this lab had experience with the gene,” said Freed.

By July of this year, an experiment with a gene therapy virus that corrects SLC6A1 was tested on normal lab mice, which showed no sign of a toxic response, an encouraging sign. And by September, a line of CRISPR mice with Maxwell’s exact genetic mutation had been created at Tongji University.

“It is the literal mouse version of him,” said Freed. “Testing a therapy in this mouse is as close as science can get to testing in my son directly.”

To pay for all this, Maxwell’s family started fundraising last November and organized the first medical symposium on SLC6A1 in New Orleans that same month. They opened a GoFundMe account, which has raised $600,000, and held 35 fundraisers, which raised an additional $400,000 by October. In one charity competition, Larson from the Colorado Children’s Hospital, who diagnosed Maxwell, personally helped her raise $75,000.

“It is the literal mouse version of him. Testing a therapy in this mouse is as close as science can get to testing in my son directly.”

That money is helping to pay for the next step — getting the CRISPR mice to Gray’s lab to test the SLC6A1-correcting virus on them. But it’s not as simple as putting the mice in a box and shipping them by mail. The mice will be transferred through a lab at Vanderbilt University headed by Katty Kang, an expert on the neurotransmitter disrupted by Maxwell’s mutation.

“Amber is helping us to advance science, and everyone is making this a priority because of the young lives at stake — not just Maxwell, but other children this could help,” Kang told BuzzFeed News.

Once the four mice arrive, they will spend several weeks in quarantine, be tested to make sure they have Maxwell’s specific “point” mutation in the SLC6A1 gene, and breed with normal lab mice to produce generations of mixed-inheritance mice to serve as controls in future experiments. The mutant mice will be closely monitored before they head to UT Southwestern to make sure that they demonstrate the same problems and genetics as human patients with SLC6A1 and can therefore be used in any future clinical trials of gene therapy.

Right now at UT Southwestern, results from a safety test of the gene therapy virus — conducted by Gray’s lab on young, normal lab mice — is awaiting publication. If that works out, once the Chinese mice are sent over, they will also receive the gene-correcting virus. His team will see if their symptoms improve and to what extent their brain cells accept the corrected gene.

Courtesy Amber Freed

Maxwell’s brain cells seen through a microscope (left), and a sample of his cells in a petri dish.

And then, Freed just needs another $5.5 million. Half a million dollars will go to test the virus in a second SLC6A1 animal model, likely a rat, as another safety step. Two million dollars will go toward creating more of the gene-correcting virus for a human safety study if that proves to be safe. And finally, if all that works out, $3 million will be needed to conduct the experiment on Maxwell and other children next year, following the path of the GAN clinical trial led by Gray.

“It’s a really horrible realization that the only thing standing in the way of a cure for your 2-year-old is money,” said Freed.

Freed acknowledges that she has only been able to pursue a cure for Maxwell because her family has the resources to do so — which she would never have had growing up in small towns in Texas, Montana, and Colorado in a poor family affected by alcoholism. “I grew up visiting my parents in rehab and knew what to say to put a family member on a 72-hour psychiatric hold by age 12,” she said. She dug herself out to build a career in finance, and hoped her kids would never have to experience the struggles she did growing up.

Even so, the fight hasn’t been easy on them — or on Maxwell’s sister, Riley.

Freed worries her daughter is growing up in doctors’ waiting rooms, waiting on treatments for her brother to end. Maxwell’s disease has progressed, causing him to constantly clench his fingers, and sometimes pull his sister’s hair. His 3-year-old sister will gently remind him, “Soft hands, Maxie.”

Families like the Freeds are at the forefront of efforts to turn diagnoses of rare genetic ailments, which often used to be the stopping point for medicine, into treatments. A similar case saw the family of a 3-year-old girl, Mila Makovec, raise $3 million for gene therapy to cure her Batten disease, a deadly genetic brain disease that affects 2 to 4 of every 100,000 children born in the US.

In a New England Journal of Medicine editorial on that case published in October, FDA officials questioned how high the agency should set the safety bar for such treatments, meant for severe diseases affecting so few people. In these cases, parents are often collaborators in developing treatments, and might not want to stop efforts that come with high risks. “Even in rapidly progressing, fatal illnesses, precipitating severe complications or death is not acceptable, so what is the minimum assurance of safety that is needed?” wrote senior FDA officials Janet Woodcock and Peter Marks.

“This is way beyond what anyone expects of families.”

Finally, Woodcock and Marks wrote, “finding sustainable funding for such interventions may prove challenging, because the cost of production can be quite substantial, particularly for gene therapies.”

In our era of financial inequality, the specter of wealthy parents buying custom genetic treatments for their children’s ailments — while other parents desperately resort to GoFundMe accounts, or else do nothing — looms as a possibility.

“This is way beyond what anyone expects of families,” said Larson. The pathway has been opened up by the brave new world of improved genetic diagnoses, and the coming of age of rapid genetic engineering tools like CRISPR.

But only 20 years ago, an experimental gene therapy that relied on a “harmless” virus killed an 18-year-old volunteer, Jesse Gelsinger, in a research misconduct case that brought gene therapy to a standstill. Now more than 2,500 gene therapy clinical trials have been conducted, and more than 370 are underway. The human genome was not sequenced until 2000; today, mapping an entire human gene map costs around $700. In this new era, customized treatments for rare genetic diseases like Maxwell’s are suddenly possible.

“What I hope is that we are paving the way for other parents to help their children,” said Freed.

Families of children with rare genetic diseases are also working together to make treatments like the one Freed is spearheading possible, said Larson.

“They support each other and work together,” he said. The best example might be the families of children with cystic fibrosis, who — through the Cystic Fibrosis Foundation and the discovery of the gene responsible for the disease in 1989 — have pushed for the discovery of new drug treatments. In October, the FDA approved a “breakthrough” pharmaceutical that could treat 90% of cases.

“It is easier working with FDA on this kind of approach rather than starting from scratch,” Gray told BuzzFeed News by email. After all, he said, “it’s easier to follow a path that you’ve already walked down.”

Similarly, Freed hopes the SLC6A1 Connect advocacy group she started can lead to similar treatments for other children with genetic epilepsies caused by the gene.

“I don’t think any parent should be expected to single-handedly cure his or her child’s rare disease,” said Helbig. “Amber is a very tenacious and persistent person, and she will fight tooth and nail for her kids. But a lot of people don’t have the resources — and they shouldn’t have to.”

Helbig says that “cautious optimism” is appropriate on the chances of research yielding a genetic therapy for children like Maxwell. “For SLC6A1, it’s really too early to say whether this is going to work.”

But if it works, it might lead many more parents to get genetic tests for children that will reveal undiagnosed problems, she said. Many doctors discourage extensive genetic tests, thinking they won’t find anything helpful. In the absence of known treatments, insurers are also reluctant to pay for such tests, discouraging all but the most fortunate and resourceful parents. Even for them, there are no guarantees.

“The other tough reality is the possibility this treatment won’t be completed in time to help Maxwell,” said Freed. “I love him with every ounce of my being, and I want him to know that I did everything humanly possible to change his outcome.” ●

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lopezdorothy70-blog · 6 years

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15 Year Old French Girl's “Descent into Hell” After Gardasil Vaccine – Wheelchair Bound and Paralyzed

Marie Océane photo prior to being injected with the Gardasil vaccines.

Gardasil in France: Marie-Océane Bourguignon's Experience

by SaneVax, Inc. Story submitted by her parents

Marie–Océane's parents, Jean-Jacques and Yveline Bourguignon, granted permission for their daughter's story to be published hoping they can help people realize there are potential risks involved with HPV vaccinations. They do not want anyone else to go through what they have experienced without knowing of the possibility in advance.

Jean-Jacques and Yveline say Océane was a girl full of joy, health, and laughter before her 15th birthday. They affectionately called her their 'little pearl.' She never had to visit the doctor for an illness. That is until her life was turned upside-down because of trust. This is her story.

Océane was 15 years old when she went to her family doctor to get a medical certificate for dancing with a friend. The doctor suggested Gardasil for cervical cancer prevention. Her parents trusted their family doctor and consented to the vaccination. They did not realize this decision would set off a chain of events that would make Dante's Inferno look like a picnic.

In 2010, Marie-Océane Bourguignon received two injections of Gardasil; the first on October 11th and the second on December 13th. Two weeks after the first injection, she experienced sensory and motor problems in her upper limbs before spontaneously and gradually regressing over a two week period. Her parents thought the tingling in her arms and loss of balance were simply a normal part of adolescence.

Two months later, after the second injection, she vomited and suffered from severe dizziness. Three months after the second injection, on the 13th of March 2011, Marie–Océane was hospitalized at Centre Hospitalier de Dax for deterioration in her general health, cerebral-vestibular disturbances and sensory-motor impairment (ataxia-an inability to coordinate voluntary muscular movements, and vertigo).

On March 15, 2011, an MRI of her brain revealed lesions in the white matter. The year 2011 was a descent into hell for Océane's parents. They spent their time traveling from home to hospital and back. Océane's attacks were devastating. She could appear to be in good health in the evening before bed and be vomiting as soon as she woke up the next morning. Her parents didn't know from one day to the next what new symptom they would have to help Océane deal with.

One stroke had left her in a wheelchair without vision or hearing due to the acute encephalomyelitis.

For two years, Océane could not attend school. Wheelchairs, facial paralysis, dizziness and great fatigue kept her home.

One of the many hospital visits for our daughter

Fortunately, she had friends to support her during the time she was suffering from so many new medical conditions.

Her mother had to quit her job to be with Océane during her time of need. Yveline refused to leave her daughter alone when she was in such a physical and moral state. Océane's mother and father lived in constant fear of losing their 'precious pearl.'

The doctors initially thought Marie was suffering from either multiple sclerosis or acute disseminated encephalomyelitis (ADEM). After multiple subsequent hospitalizations, it was determined that she had developed multiple sclerosis, a chronic, typically progressive disease involving damage to the sheaths of nerve cells in the brain and spinal cord with symptoms including numbness, impairment of speech and muscular coordination, blurred vision, and severe fatigue. Marie-Océane will live with this condition for the rest of her life. There is no known cure.

In spite of all this, her parents feel lucky. Despite the fact her doctors hesitated to make a firm diagnosis for two years, they concluded the encephalomyelitis was a result of the HPV vaccinations. Since the temporal association between Océane's symptoms and Gardasil were quickly brought to light by her doctors, Marie's parents avoided the medical wandering many French parents have been forced to endure when their daughters exhibited new medical conditions after Gardasil. The second bonus for Marie's family was her doctors made a statement to pharmacovigilance regarding their assessment of the reasons for Marie's symptoms.

During the two years, doctors were trying to decide on a final diagnosis for Marie, her parents requested an expert opinion from the Regional Commission for Medical Accidents in Aquitaine. They concluded that the pathology was consistent with a vaccine injury but that because her father (age 50) had type 2 diabetes, there was possibly an underlying genetic susceptibility.

Consequently, her parents filed for compensation on her behalf with CRCI, Regional Medical Injury Arbitration and Compensation Tribunal in Bordeaux on January 28, 2012.

In Bordeaux, on September 18, 2013, Judge Patrick Mairé handed down a decision stating Gardasil was 50% responsible for the permanent injury of this French teenager who had received two injections of the HPV vaccine. The other 50% was attributed to a genetic predisposition for autoimmune disorders. (Judge Mairé presides over lawsuits filed with a regional branch of the CRCI in France, which is the equivalent of the Vaccine Injury Compensation Program (VICP) court in the United States.)

Sanofi, which sells Gardasil on behalf of Merck in Europe had to make a compensation proposal. They did not accept accountability for the injury despite the first judgment and the reports of two medical experts. They remained in denial and alluded to the arrogance of the family for daring to claim their daughter's condition was a vaccine injury. Sanofi's settlement agreement even attempted to pass the parents off as anti-vaccine.

Even so, the Bourguignon family had been successful. They could have accepted the compensation award and gone on to try and rebuild their lives.

But this family knew they were not the only ones to have had their lives turned upside down after using the HPV vaccine, Gardasil. They knew the decision by CRCI would not be widely publicized in order to warn other families about the potential risks involved with the use of HPV vaccines. In short, they knew accepting the compensation would benefit no one other than their own family.

Consequently, they decided to turn down the award and take their case to a traditional criminal court where the outcome of the adjudication could be made public. They decided a just decision for their family was simply not good enough. They wanted justice for all victims of adverse events after Gardasil. They wanted to have the opportunity to warn others about the potential risks involved with consenting to the use of HPV vaccines. They wanted the opportunity to make the public aware of the fact that HPV vaccines can be quite dangerous for some individuals.

Our family: Still fighting for truth and justice

The Bourguignon family knew there were more than 700 families in France who also had daughters suffering from serious new medical conditions after the administration of Gardasil (source: Agence Nationale Sécurité Médicament in France), but believed the health authorities hid it and minimized it with the complicity of the laboratories.

Faced with this injustice, they decided to mediate the case. In November 2013, their attorney, Mr. Coubris, filed a criminal complaint against Sanofi Pasteur and the French Medicines Agency on behalf of their family and 50 other families like theirs.

In November 2015, they discovered this complaint had been buried by the Paris public prosecutor's office who stated there was no direct link between Gardasil and the pathologies of the nervous system experienced by the girls represented in Mr. Coubris' complaint. This was done without consulting any of the 50 families who had joined the Bourguignon family in their criminal complaint.

None of the families involved could believe the accountability of the vaccine had been established and the case closed without their knowledge or an opportunity to be heard.

Attorney Coubris immediately filed an appeal and the families decided to also file a civil proceeding with the Dean of Investigating Judges in Paris. They want the truth about this vaccine to be made public. The families have vowed to fight to the end. They will accept nothing less than completely honest and open scientific debates. To accomplish this they have enlisted the assistance of several independent associations to help facilitate symposiums on the subject within the medical/scientific community regardless of what the courts decide.

Today, Marie–Océane is still fighting to rebuild her life. At 20, she could not pursue her chosen career in architecture. At 22 years old, she passed a pastry chef's CAP and wants to create her own business selling artisan pastries and local products. Her parents hope she has her future in front of her, but they realize it's not going to be easy.

She is still young, despite losing her teenage years. She will always be chronically ill and unable to work for a boss. In order to have a future, Marie will have to be her own boss so she can work at her own pace. Her parents will be behind her to help.

The Bourguignon family continues to fight not only for their daughter but for all the other French families who are still suffering. They fight for the parents who have lost their children. They fight to help French families obtain justice for the sacrifices they have had to make simply because they trusted their doctors' advice.

Information on the ongoing legal battle:

No family should have to experience this

After a judgment in our favor on the Crci de Bordeaux and an imputability following the Gardasil, we filed a criminal complaint on the Paris court against Sanofi and the drug agency with the help of master Coubris de Bordeaux, in November 2013.

This procedure was followed by about 50 families and complaints.

After two years, without investigation, because the families were not even auditioned, a prosecutor of the health pole of Paris closed the file.

We then re-lodged a new criminal complaint through the senior judge to benefit from an investigation and a judge of instruction nome.

We were summoned only once by this judge in Paris. We feel that nobody wants to open this folder and this Pandora's Box.

In February 2018 a new complaint was filed, this time to the civil court Dax asking for damages from the laboratory Sanofi.

This complaint is still under investigation. We are waiting for a convocation with the judge of Dax.

This last issue is based on the two expert witness reports we had in 2012 and 2012 on the Bordeaux CrC case.

Read the full article at SaneVax.org.

Comment on this article at VaccineImpact.com.

More information about Gardasil

Young women whose lives were destroyed by the HPV vaccine.

California Nurse Gives Gardasil Vaccine to Own Daughter who Develops Leukemia and Dies

Infant Accidentally Vaccinated with Gardasil – Mother Blamed for Vaccine Injuries and Baby Medically Kidnapped

Iowa Girl Faces Death: Life Destroyed by Gardasil Vaccine

Gardasil Vaccine Given without Consent and Ruins Life of 14 Year Old Girl

After 3 Years of Suffering 19 Year Old Girl Dies from Gardasil Vaccine Injuries

Gardasil: The Decision We Will Always Regret

15 Year Old French Girl's “Descent into Hell” After Gardasil Vaccine – Wheelchair Bound and Paralyzed

The Gardasil Vaccine After-Life: My Daughter is a Shadow of Her Former Self

Gardasil: An Experience no Child Should Have to Go Through

I Want my Daughter's Life Back the Way it was Before Gardasil

Gardasil Vaccine: Destroyed and Abandoned

15-Year-Old Vaccinated by Force with Gardasil now Suffers from Paralysis and Pain

Recovering from my Gardasil Vaccine Nightmare

Gardasil: We Thought It Was The Right Choice

“HPV Vaccine Has Done This to My Child”

13 Year Old World Championship Karate Student Forced to Quit After Gardasil Vaccine

If I Could Turn Back Time, Korey Would not Have Received any Gardasil Shots

What Doctors Don't Tell You: Our Gardasil Horror Story

Family Fights U.S. Government over Compensation for Gardasil Vaccine Injuries

Gardasil: When Will our Nightmare End?

HPV Vaccine Injuries: “I Cannot Begin to Describe What it is Like to Watch your Daughter Live in Such Agony”

Gardasil: Don't Let Your Child Become “One Less”

The Gardasil Vaccine Changed Our Definition of “Normal”

Gardasil: I Should Have Researched First

“They've Been Robbed of Their Womanhood” – Local Milwaukee Media Covers Gardasil Vaccine Injuries

Gardasil: The Day Our Daughter's Life Changed

Gardasil: The Decision I will Always Regret

Gardasil Vaccine: One More Girl Dead

Gardasil: A Parent's Worst Nightmare

After Gardasil: I Simply Want my Healthy Daughter Back

Gardasil: My Family Suffers with Me

Gardasil Changed my Health, my Life, and Family's Lives Forever

Gardasil: Ashlie's Near-Death Experience

Gardasil: My Daughter's Worst Nightmare

My Personal Battle After the Gardasil Vaccine

Gardasil: The Worst Thing That Ever Happened to Me

A Ruined Life from Gardasil

HPV Vaccines: My Journey Through Gardasil Injuries

The Dark Side of Gardasil – A Nightmare that Became Real

Toddler Wrongly Injected with Gardasil Vaccine Develops Rare Form of Leukaemia

Leaving a lucrative career as a nephrologist (kidney doctor), Dr. Suzanne Humphries is now free to actually help cure people. In this autobiography she explains why good doctors are constrained within the current corrupt medical system from practicing real, ethical medicine. FREE Shipping Available! Order here.

Medical Doctors Opposed to Forced Vaccinations – Should Their Views be Silenced?

eBook – Available for immediate download.

One of the biggest myths being propagated in the compliant mainstream media today is that doctors are either pro-vaccine or anti-vaccine, and that the anti-vaccine doctors are all “quacks.”

However, nothing could be further from the truth in the vaccine debate. Doctors are not unified at all on their positions regarding “the science” of vaccines, nor are they unified in the position of removing informed consent to a medical procedure like vaccines.

The two most extreme positions are those doctors who are 100% against vaccines and do not administer them at all, and those doctors that believe that ALL vaccines are safe and effective for ALL people, ALL the time, by force if necessary.

Very few doctors fall into either of these two extremist positions, and yet it is the extreme pro-vaccine position that is presented by the U.S. Government and mainstream media as being the dominant position of the medical field.

In between these two extreme views, however, is where the vast majority of doctors practicing today would probably categorize their position. Many doctors who consider themselves “pro-vaccine,” for example, do not believe that every single vaccine is appropriate for every single individual.

Many doctors recommend a “delayed” vaccine schedule for some patients, and not always the recommended one-size-fits-all CDC childhood schedule. Other doctors choose to recommend vaccines based on the actual science and merit of each vaccine, recommending some, while determining that others are not worth the risk for children, such as the suspect seasonal flu shot.

These doctors who do not hold extreme positions would be opposed to government-mandated vaccinations and the removal of all parental exemptions.

In this eBook, I am going to summarize the many doctors today who do not take the most extremist pro-vaccine position, which is probably not held by very many doctors at all, in spite of what the pharmaceutical industry, the federal government, and the mainstream media would like the public to believe.

Read:

Medical Doctors Opposed to Forced Vaccinations – Should Their Views be Silenced?

on your mobile device!

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Dr. Andrew Moulden: Every Vaccine Produces Harm

eBook – Available for immediate download.

Canadian physician Dr. Andrew Moulden provided clear scientific evidence to prove that every dose of vaccine given to a child or an adult produces harm. The truth that he uncovered was rejected by the conventional medical system and the pharmaceutical industry. Nevertheless, his warning and his message to America remains as a solid legacy of the man who stood up against big pharma and their program to vaccinate every person on the Earth.

Dr. Moulden died unexpectedly in November of 2013 at age 49.

Because of the strong opposition from big pharma concerning Dr. Moulden's research, we became concerned that the name of this brilliant researcher and his life's work had nearly been deleted from the internet. His reputation was being disparaged, and his message of warning and hope was being distorted and buried without a tombstone. This book summarizes his teaching and is a must-read for everyone who wants to learn the “other-side” of the vaccine debate that the mainstream media routinely censors.

Read:

Read Dr. Andrew Moulden: Every Vaccine Produces Harm on your mobile device!

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battybat-boss · 6 years

Text

15 Year Old French Girl's “Descent into Hell” After Gardasil Vaccine – Wheelchair Bound and Paralyzed

Marie Océane photo prior to being injected with the Gardasil vaccines.

Gardasil in France: Marie-Océane Bourguignon's Experience

by SaneVax, Inc. Story submitted by her parents

One stroke had left her in a wheelchair without vision or hearing due to the acute encephalomyelitis.

For two years, Océane could not attend school. Wheelchairs, facial paralysis, dizziness and great fatigue kept her home.

One of the many hospital visits for our daughter

Fortunately, she had friends to support her during the time she was suffering from so many new medical conditions.

Consequently, her parents filed for compensation on her behalf with CRCI, Regional Medical Injury Arbitration and Compensation Tribunal in Bordeaux on January 28, 2012.

Even so, the Bourguignon family had been successful. They could have accepted the compensation award and gone on to try and rebuild their lives.

Our family: Still fighting for truth and justice

None of the families involved could believe the accountability of the vaccine had been established and the case closed without their knowledge or an opportunity to be heard.

Information on the ongoing legal battle:

No family should have to experience this

This procedure was followed by about 50 families and complaints.

After two years, without investigation, because the families were not even auditioned, a prosecutor of the health pole of Paris closed the file.

We then re-lodged a new criminal complaint through the senior judge to benefit from an investigation and a judge of instruction nome.

We were summoned only once by this judge in Paris. We feel that nobody wants to open this folder and this Pandora's Box.

In February 2018 a new complaint was filed, this time to the civil court Dax asking for damages from the laboratory Sanofi.

This complaint is still under investigation. We are waiting for a convocation with the judge of Dax.

This last issue is based on the two expert witness reports we had in 2012 and 2012 on the Bordeaux CrC case.

Read the full article at SaneVax.org.

Comment on this article at VaccineImpact.com.

More information about Gardasil

Young women whose lives were destroyed by the HPV vaccine.

California Nurse Gives Gardasil Vaccine to Own Daughter who Develops Leukemia and Dies

Infant Accidentally Vaccinated with Gardasil – Mother Blamed for Vaccine Injuries and Baby Medically Kidnapped

Iowa Girl Faces Death: Life Destroyed by Gardasil Vaccine

Gardasil Vaccine Given without Consent and Ruins Life of 14 Year Old Girl

After 3 Years of Suffering 19 Year Old Girl Dies from Gardasil Vaccine Injuries

Gardasil: The Decision We Will Always Regret

15 Year Old French Girl's “Descent into Hell” After Gardasil Vaccine – Wheelchair Bound and Paralyzed

The Gardasil Vaccine After-Life: My Daughter is a Shadow of Her Former Self

Gardasil: An Experience no Child Should Have to Go Through

I Want my Daughter's Life Back the Way it was Before Gardasil

Gardasil Vaccine: Destroyed and Abandoned

15-Year-Old Vaccinated by Force with Gardasil now Suffers from Paralysis and Pain

Recovering from my Gardasil Vaccine Nightmare

Gardasil: We Thought It Was The Right Choice

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healthcarebiz · 7 years

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NeuroVive to Continue NeuroSTAT® Clinical Development After Positive Outcome in Preclinical and Clinical TBI Studies

LUND, Sweden,, May 23, 2017 /PRNewswire/ --

NeuroVive Pharmaceutical AB(Nasdaq Stockholm: NVP, OTCQX: NEVPF) today announced positive results from clinical and preclinical studies with its drug NeuroSTAT® for the prevention of the sequelae of traumatic brain injury (TBI). The company is now preparing for the next clinical study with NeuroSTAT for TBI.

The combined positive outcome of the results from the clinical phase IIa CHIC (Copenhagen Head Injury Cyclosporine) study, conducted at Rigshospitalet in Copenhagen, Denmark, and the preclinical studies, done in collaboration with the University of Pennsylvania (Penn), USA, have now convinced NeuroVive to proceed into the next stage of clinical development. The company has therefore decided to close the CHIC study in advance and focus its TBI project efforts on preparing for the next clinical study with NeuroSTAT for TBI.

The results of the open label CHIC study show that appropriate dose-dependent concentration levels can be measured in the blood, and that NeuroSTAT reaches the target, the central nervous system (CNS). No unexpected safety signals were detected. Thus, the primary objective of CHIC to demonstrate safety and elucidate pharmacokinetics of NeuroSTAT at two different dose levels (5 and 10 mg/kg/day) in patients with severe TBI has been reached.

A significantly reduced volume of brain injury (35% decrease) after NeuroSTAT treatment was observed in MRI scans in the experimental TBI studies done in collaboration with Penn. Furthermore, these studies displayed positive changes in brain energy metabolite levels and mitochondrial respiratory function, as well as decreased generation of reactive oxygen species.

"The NeuroSTAT effects observed in our state-of-the art experimental model for TBI are very promising. Our collaborative approach on preclinical study design will set a completely novel standard in the development of new drugs in the field", said Susan Margulies, PhD, Professor in the Department of Bioengineering at the University of Pennsylvania, US, and lead investigator for the preclinical studies.

"The positive results are important milestones for the NeuroSTAT clinical development program. We now have the data we need to move forward to the next phase in the clinical development. We want to thank all site staff, caregivers, patients and families at Rigshospitalet in Copenhagen for their valuable contribution to this project. Also, we wish to thank the team at Penn for a very fruitful collaboration that has given very important scientific support to the NeuroSTAT clinical program", said Erik Kinnman, CEO at NeuroVive.

"With the decision to move forward with the TBI program, the company's project portfolio have matured further and the approach of protecting the mitochondria in TBI with NeuroSTAT is validated by the new data. Importantly, we are about to take another step towards developing a medicine to patients with TBI, which is an area of high unmet medical need", he continued.

NeuroVive has initiated preparatory activities for the continued clinical development program. Next step is discussions with regulatory authorities in Europe and the US regarding the findings in the clinical and experimental studies, as well as the design of the next clinical study (Phase IIb proof of concept). Additionally, study preparations such as production of investigational medicinal product, approval of the clinical trial application, IND approval, ethics committee approval etc. need to be completed before study start.

About the Phase IIa clinical study, CHIC at Rigshospitalet in Copenhagen

The phase II CHIC (Copenhagen Head Injury Ciclosporin) study was an open label study. The primary objective with the study was to establish safety and to characterize the pharmacokinetic profile of two dosing regimens of NeuroSTAT in severe Traumatic Brain Injury (TBI) patients. In addition, exploratory measurements to evaluate the efficacy of NeuroSTAT at mitochondrial level, and study how NeuroSTAT affects various biochemical processes after a brain injury, are being processed Principal Investigator for the study is Jesper Kelsen, MD, PhD, Specialist in Neurosurgery, Department of Neurosurgery, Rigshospitalet, Copenhagen University Hospital.

About the TBI experimental studies at the University of Pennsylvania (Penn)

In collaboration with Penn, NeuroVive has evaluated the effect of NeuroSTAT in a non-clinical experimental TBI model. A total of three substudies have successfully been conducted and completed. Positive results from the first two substudies established the pharmacokinetic profile of NeuroSTAT in blood, CSF and brain in the disease model, and showed that NeuroSTAT dose-dependently crosses the blood-brain barrier. The third and final sub study evaluated several different efficacy parameters related to mitochondrial function and metabolism, as well as advanced translational brain imaging MR techniques important in the design of the next clinical study. Further analyses are ongoing and additional data will be presented at the 7th Annual Traumatic Brain Injury Conference in Washington, DC, US on 24-25 May and at the Annual National Neurotrauma Symposium, Neurotrauma 2017, in Snowbird, Utah, US, on 9-12 July 2017.

About TBI

Traumatic brain injury (TBI) is caused by external violence to the head resulting in immediate damage to nerve cells. The damage continues to worsen for several days after the trauma, which in many cases has a significantly negative effect on the overall injury. At present, there are no approved treatments for the prevention of these secondary injuries. In the US, some 2.2 million people are affected annually, causing more than 50,000 deaths and 280,000 hospitalizations. The direct and indirect costs associated with TBI are an estimated USD 60 billion, and a large number of patients suffer moderate to severe functional disabilities requiring intensive care and various forms of support (www.nih.gov). The aim is that better preventive therapies for secondary brain damage, such as NeuroSTAT, will lead to higher survival rates, and significantly improve quality of life and neurological function of patients post-TBI.

About NeuroVive

NeuroVive Pharmaceutical AB is a leader in mitochondrial medicine. The company is committed to the discovery and development of medicines that preserve mitochondrial integrity and function in areas of unmet medical need. The company's strategy is to advance drugs for rare diseases through clinical development and into the market. The strategy for projects within larger indications outside the core focus area is out-licensing in the preclinical phase. NeuroVive enhances the value of its projects in an organization that includes strong international partnerships and a network of mitochondrial research institutions, as well as expertise with capacities within drug development and production.

NeuroVive has a project in early clinical phase II development for the prevention of moderate to severe traumatic brain injury (NeuroSTAT®) and one project entering clinical phase I (KL1333). NeuroSTAT has orphan drug designation in Europe and in the US. The R&D portfolio consists of several late stage research programs in areas ranging from genetic mitochondrial disorders to cancer and metabolic diseases such as NASH.

NeuroVive is listed on Nasdaq Stockholm, Sweden (ticker: NVP). The share is also traded on the OTCQX Best Market in the US (OTC: NEVPF).

For investor relations and media questions, please contact:

Cecilia Hofvander, NeuroVive, Tel: +46-(0)-46-275-62-21 [email protected]

NeuroVive Pharmaceutical AB (publ) Medicon Village, SE-223 81 Lund, Sweden Tel: +46-(0)-46-275-62-20 (switchboard) www.neurovive.com

This information is information that NeuroVive Pharmaceutical AB (publ) is obliged to make public pursuant to the EU Market Abuse Regulation. The information was submitted for publication, through the agency of the contact person set out above, at 08:30 a.m. CEST on 23 May 2017.

This information was brought to you by Cision http://news.cision.com http://ift.tt/2rvAnga

The following files are available for download:

http://ift.tt/2qbAN7T

NeuroVive to continue NeuroSTAT® clinical development after positive outcome in preclinical and clinical TBI studies

SOURCE NeuroVive Pharmaceutical

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