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Category Archives: Cerebral Palsy Treatment

Dublin teen with cerebral palsy sets date to travel to US for ‘life-changing’ surgery – Irish Examiner

Posted: September 4, 2017 at 7:41 pm

A Dublin teen with cerebral palsy has set a date to travel to the US for ‘life-changing’ surgery, writes Amy Ryan.

Courtney Manning, a 19-year-old from Coolock in Dublin, lives with cerebral palsy and has seen her mobility deteriorate over the last number of years, with the likelihood that she will be wheelchair-bound in the next year.

Courtney has booked her flights to the US for November 5, 2017 so she hopes to raise the remaining 50,000 over the next two months.

In January, Courtney began campaigning to raise funds after being approved for selective dorsal rhizotomy surgery in St Louis Children’s Hospital, Missouri.

SDR involves cutting of some of the sensory nerve fibres that come from the muscles and enter the spinal cord.

The hospital has said that SDR is the only surgical procedure that can provide permanent reduction of spasticity in cerebral palsy and they have had great success with patients, with certain types of CP, who have received the treatment.

Courtney has tried various treatments such as Botox and splints to alleviate the symptoms to no avail.

In March 2016, she had a major surgery on her Achilles tendon to have them lengthened however, the teenager had many complications following the surgery and it has left her in a lot of pain.

“I feel like the disability has destroyed me. I’m like a prisoner, I can’t leave the house for too long because I can’t walk.

“It’s not a way to live, I’ve been weighed down,” said Courtney.

Courtney has just finished her Leaving Certificate and she received all honours in her results.

“I was so happy with my results after the year I’ve had, I was delighted,” she said.

Courtney will be having SDR surgery along with hamstring and heel chord surgery (PERCS) which means she will be having 2 surgeries in total.

She will spend 5 weeks in hospital and then have a two-year rehab programme.

The surgery will mean that she won’t be confined to a wheelchair and she will be able to walk, dance and play sports, which she is unable to do now in her current condition.

The cost of the surgeries is significant but they have managed to raise 50,000 by organising fundraising events and through the generosity of strangers.

“People have been very generous, we’ve had anonymous donations that have really helped us along the way,” said Courtney.

“I’ve been a very fortunate person with all the help I’ve gotten so far,” she added.

Their total aim is 100k to cover the costs of the surgery, travel, rehab, bracing and equipment.

After Courtney has the surgery, she plans to take the year to recover and then go back to studying to join her friends in university.

“I want to study physiotherapy but the disability is stopping me at the moment, I can’t live my life.

“I want to go off to college with all my friends but I can’t right now,” she said.

“If I don’t get this surgery, my whole life is going to be crushed,” she added.

If you would like to donate to help Courtney with her surgeries you can donate here.

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Dublin teen with cerebral palsy sets date to travel to US for ‘life-changing’ surgery – Irish Examiner

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Stem Cell Treatment for Cerebral Palsy – Beike Biotechnology

Posted: at 7:41 pm


Acupuncture is a technique in which practitioners stimulate specific points on the body – most often by inserting thin needles through the skin. It is one of the most effective practices used in traditional Chinese medicine. Acupuncture stimulates nerve fibers to transmit signals to the spinal cord and brain, activating the bodys central nervous system. The spinal cord and brain then release hormones responsible for making us feel less pain while improving overall health. Acupuncture may also: increase blood circulation and body temperature, affect white blood cell activity (responsible for our immune function), reduce cholesterol and triglyceride levels, and regulate blood sugar levels.


Aquatic Physical Therapy is the practice of physical therapy in a specifically designed water pool with a therapist. The unique properties of the aquatic environment enhance interventions for patients with neurological or musculoskeletal conditions. Aquatic therapy includes a wide range of techniques allowing patients to improve their balance, muscle strength and body mechanics. Aquatic therapy works to enhance the rehabilitation process and support effectiveness of stem cell treatment.

Epidural Stimulation

Hyperbaric Oxygen Therapy

Hyperbaric Oxygen Therapy (HBOT) is the medical use of oxygen at a level higher than atmospheric pressure. The equipment required consists of pressure chamber, which may be of rigid or flexible construction, and a means of delivering 100% oxygen into the respiratory system. Published research shows that HBOT increases the lifespan of stem cells after injection and provides an oxygen-rich atmosphere for the body to function at optimum levels.

Nerve Growth Factor (NGF)

Nerve growth factor (NGF) is a member of the neurotrophic factor (neurotrophin, NTFS) family, which can prevent the death of nerve cells and has many features of typical neurotransmitter molecules. NGF plays an important role in the development and growth of nerve cells. NGF is synthesized and secreted by tissues (corneal epithelial, endothelial, and corneal stromal cells), and it can be up-taken by sympathetic or sensory nerve endings and then transported to be stored in neuronal cell bodies where it can promote the growth and differentiation of nerve cells.NGF can exert neurotrophic effects on injured nerves and promote neurogenesis (the process of generating neurons from stem cells) that is closely related to the development and functional maintenance and repair of the central nervous system. It is also capable of promoting the regeneration of injured neurons in the peripheral nervous system, improving the pathology of neurons and protecting the nerves against hypoxia (lack of oxygen)/ischemia (lack of blood supply).

Nutrition Therapy

Occupational Therapy

Occupational therapy interventions focus on adapting the environment, modifying the task and teaching the skill, in order to increase participation in and performance of daily activities, particularly those that are meaningful to the patient with physical, mental, or cognitive disorders. Our Occupational Therapists also focus much of their work on identifying and eliminating environmental barriers to independence and participation in daily activities, similar to everyday life.


Physical therapy or physiotherapy (often abbreviated to PT) is a physical medicine and rehabilitation specialty that, by using mechanical force and movements, remediates impairments and promotes mobility, function, and quality of life through examination, diagnosis, prognosis, and physical intervention. We combine our PT with stem cells for maximum physical rehabilitation improvements.

Transcranial Magnetic Stimulation

Research has shown that TMS can effectively treat symptoms of depression, anxiety, neurological pain, stroke, spinal cord injuries, autism and more. This procedure is very simple and noninvasive. During the procedure, a magnetic field generator or coil is placed near the head of the person receiving the treatment. The coil produces small electrical currents in the region of the brain just under the coil via electromagnetic induction. This electrical field causes a change in the transmembrane current of the neuron which leads to depolarization or hyperpolarization of the neuron and the firing of an action potential.

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Family hope to raise 160k for groundbreaking stem cell treatment for daughter, Ivy, who suffers from cerebral palsy – Scottish Daily Record

Posted: at 7:41 pm

Little Ivy Rose has a smile that lights up a room but unless her parents raise enough money for groundbreaking treatment she will have to use a wheelchair for the rest of her life.

The three-year-old faces a life of isolation because her cerebral palsy means she can do very little for herself. But she is a delightfully engaging child who shows courage beyond her years.

Stephen and Sky Summers, from Shotts, Lanarkshire, were devastated when their little girl was born prematurely with medical difficulties.

Ivy was born just a year after the couples twins, Xander and Sandy died after being born too prematurely.

Sky, 36, said: They died in my arms. One was just under an hour, the other just over an hour.

When Ivy also arrived early her parents feared she would die too.

Now they are determined to do everything within their power to ensure she gets the very best chance to live as normal a life as possible.

Sky said: When Ivy arrived, she was whisked off to ICU. I didnt even get to touch her. We didnt think there were going to be big problems at first. She came out crying and gurgling.

Initially, Ivy was tube fed and it was three weeks before she could have milk from a bottle. Her problems didnt become completely apparent until Ivy came home at five weeks.

Sky said: We brought Ivy home and within the first 24-48 hours, she had what we call her first episode.

She stopped breathing. She was sleeping in the carrycot next to our bed. I fed her, put her into carrycot, turned round and heard a commotion.

Her arms were shaking and she was very distressed. She couldnt breathe. I picked her up put her across my knee, patting her back but I couldnt get her to start breathing. She started turning blue.

It was a terrifying moment. I started to very gently breathe into her mouth and she came round and started breathing again.

That was the beginning of many episodes over the next eight months. It was a very traumatic time where we just tried to keep her alive.

It transpired the tot had acid reflux and the pain and shock of the acid was enough to stop her breathing.

As she grew, her condition improved but Ivy has never been able to eat anything other than mushy food because of her cerebral palsy.

She is a happy, bright little girl but her mum is not prepared to accept there is no hope of any improvement.

Sky said: Ivy sees NHS specialists but they are only interested in managing her condition, not in curing or rehabilitating it.

When the cerebral palsy diagnosis came through around her second birthday, Sky said: I felt hopeless.

I remember very specifically being told the likely scenario was Ivy would never be able to walk unaided but she would maybe be able to manage around the house, holding on to furniture. She would most likely be in a wheelchair. The best hope is for Ivy to start any therapies as soon as possible because once she is seven her ability to be improve her mobility will diminish.

A connection through family led to meeting Dr Joanne Kurtzberg, who is awaiting approval from the US Food and Drug Administration for stem cell treatment with donor cells on cerebral palsy patients. Kurtzberg has agreed to accept Ivy on to the trial if she meets the criteria.

Ivy also has the opportunity to have treatment from specialists RehabMart including sensory therapies involving work with horses, special suits and trapezes among others.

While some of the therapies will be free, many others are expensive.

The family will have to live in the US for six months to give Ivy her best chance of improvement but it will cost 162,000 which they are hoping to crowdfund.

Sky said: It is a once-in-a-lifetime opportunity for Ivy. I am so blessed she is so happy, so affectionate, intelligent and funny but she is excluded from everywhere in life.

Exclusion is a horrendous part for a child with cerebral palsy.

Cerebral palsy is the name for a group of lifelong conditions which affect movement and co-ordination, caused by a problem with the brain which occurs before, during or soon after birth.

The symptoms arent usually obvious just after a baby is born. They become noticeable during the first two or three years. It affects each person differently but the condition may limit a childs activities and independence.

The problem with the brain doesnt worsen but the condition can put a lot of strain on the body.

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Family hope to raise 160k for groundbreaking stem cell treatment for daughter, Ivy, who suffers from cerebral palsy – Scottish Daily Record

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Russian supermodel’s foundation funds sharing of information, expertise – Albuquerque Journal

Posted: at 7:41 pm

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Natalia Vodianova has been the face of Calvin Klein campaigns and shes graced the cover of Vogue. Shes also the founder of the Naked Heart Foundation whose mission is to support people with disabilities. The organization has many projects, including funding dozens of all-inclusive play parks in Russia and creating support networks for families of children with disabilities.

Staff and faculty from the University of New Mexicos departments of neurology, physical therapy, speech and language therapy, and from Carrie Tingley Hospital are participating in a Naked Heart Foundation program aimed at bringing new ideas about working with children with special needs and their families to facilities in Russia through international exchange experiences.

We want to learn modern approaches to working with children with disabilities, said Tatiana Morozova, a child psychologist from St. Petersburg who is on the Naked Heart Foundation board and an adjunct professor in the Neurology Department at the University of New Mexico.

Morozova, fellow Naked Heart Foundation board member Svyatoslav Dovbnya, a St. Petersburg child neurologist, and a group of physicians and therapists from a hospital in the city of Tula, near Moscow, recently visited Albuquerque to observe techniques used here to help children with cerebral palsy.

The goal of the intercultural exchange is to introduce staff from the Tula hospital to modern approaches to supporting children with cerebral palsy that can be implemented at their location, said Dr. John Phillips, a UNM Professor of Neurology and Medical Director of the Mind Research Network.

Jessica Mount Matney, a New Mexico School for the Blind and Visually Impaired instructional lead teacher and speech therapist talks to a group of Russians physicians and therapists who work with children with cerebral palsy, about their preschool program. (Marla Brose/Albuquerque Journal)

Phillips has worked for many years with doctors in Russia who are involved in the treatment of children with cerebral palsy. The condition is the result of a brain injury or brain malformation, typically at or before birth. It affects body movement and muscle coordination and can involve intellectual, visual and hearing impairment.

When the opportunity to participate in the Naked Heart Foundation program arose about two years ago, he saw it as a great opportunity. He said it has been the custom in Russia to put children with cerebral palsy and autism in orphanages.

In the United States, Phillips said, the approach has shifted to developing support services for the children and their families with the emphasis being on quality of life.

Children with cerebral palsy can make good functional progress with the right kind of support, said Phillips.

Thats where the connection with the Russian supermodel comes in. Vodianova, nicknamed Supernova, came from a poor family in Nizhny Novgorod. Growing up, she helped care for her half-sister who was born with cerebral palsy and autism. After she became a successful model, she started the Naked Heart Foundation to provide play parks and supportive environments for children with disabilities.

Russian supermodel Natalia Vodianova created the Naked Heart Foundation which funds programs to help children with disabilities. (Courtesy of the Naked Heart Foundation)

Phillips said the hospital in Tula has similar facilities to Albuquerques Carrie Tingley Hospital, which provides therapy and rehabilitation services to children with physical and developmental disabilities. He and Marybeth Barkocy, assistant professor in the physical therapy department at UNM, have visited the Tula hospital in the last two years to demonstrate how they work with children.

Barkocy said they showed the Russians how to assess childrens capabilities and collect data that could help show their progress over time. They discussed how physicians and therapists here work as a team with each child, involving the childs family in developing a care plan.

Its always a family-centered approach, said Barkocy.

A group from Tula visited UNM in 2016 to observe the techniques and they maintain regular contact via Skype with Phillips, Barkocy and others from UNM to discuss ongoing progress.

Funding from the Naked Heart Foundation enabled another group of 13 Russians to travel to Albuquerque this summer. Their visit Aug. 20-26 included a tour of the New Mexico School for the Blind and Visually Impaired in Albuquerque. The school has 46 students ages 3 to 6 years old from around central New Mexico. About half are blind or visually impaired because of a brain-related problem, many have cerebral palsy.

The schools lead therapist Ellen Kivitz and speech language pathologist Jessica Mount Matney guided the Russians through the classrooms showing how teams of teachers and therapists work together to assist children in developing skills in movement, play and communication.

We havent worked with children in this way before. Special education is different in Russia. We want to be able to show a different reality for them. Children have the same needs worldwide, Morozova said.

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Russian supermodel’s foundation funds sharing of information, expertise – Albuquerque Journal

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Celtic-daft kid with cerebral palsy goes viral for his ‘Wish to Walk’ campaign – Scottish Daily Record

Posted: September 3, 2017 at 8:48 am

Irish youngster Rory Gallagher has went viral with his fundraising campaign for life-changing treatment in America – while wearing a Celtic kit.

The four-year-old has cerebral palsy and his parents were told at eight months old that he would never talk or walk.

However, against all odds Rory can now talk and the Gallagher family have set their next target on walking.

Rory – who can be seen to be wearing his Celtic top in snaps on his page – requires double hip surgeries as well as Femoral Osteotomy surgery. This has to be carried out on both of his thigh bones at the Boston Children’s Hospital at a cost of a staggering 121,334.

So far the family have raised just over 58K.

He has now appealed to the Parkhead side on Twitter – and has been applauded by fans from both side of Glasgow.

A Hoops supporter commented on Twitter: “Well done Rory keep up the fight – we are all behind you.”

Another added: “Go on Rory you show them.”

A Rangers fan added: “From a Rangers fan, this is awesome! What a wee warrior he is!”

Following the popular tweet the family thanked the public for their support.

“We hope that Rory will have the ability to live an independent life, hopefully we will see him able to care for himself to a certain level.

“We are putting in as much time and effort as we can now so that hopefully when Rory is a young adult he will be able to do the simple things in life that we take for granted.”

To back Rory visit his Go Fund Me Page here .

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$120k cerebral palsy surgery ‘worth it’ to give Hugo a shot at a normal life –

Posted: September 1, 2017 at 6:52 pm


Last updated11:40, September 1 2017


An pioneering spinal surgery overseas could help give Hugo a better chance of living a more normal life.

Wellington boy Hugo Simmons has a shot at living a normal, pain-free life but it comes with a hefty price tag $120,000 to be exact.

Hugo, 3, has spastic quadriplegia, a type of cerebral palsy which means both his arms and legs are very tight, making walking and other simple tasks difficult and painful.

Currently, he gets around in a wheelchair with help from his mum, Kerry Simmons, but that could all change thanks to a life-changing surgery in the United States.


Christine Simmons hopes Selective Dorsal Rhizotomy (SDR) surgery in America will help her grandson Hugo, 3, walk independently.

“If he has the surgery, it should help him function in a more natural normal way, giving hope that he will eventually walk instead of being confined to a wheelchair,” Simmons said.

READ MORE:*Toddler’s surgery put on hold as she prepares for different operation*Mila’s mum encourages parents to educate kids who call her ‘weird’ about cerebral palsy*Ministry approves cannabis treatment for 7-year-old girl

The spinal surgery, known as Selective Dorsal Rhizotomy (SDR), is currently unavailable in New Zealand but has been performed at St Louis Children’s Hospital in Missouri for several years.


While Hugo struggles to walk by himself, due to his cerebral palsy, he is a happy, vivacious child according to his family.

The procedure, pioneered by Dr Tae Sung Park, involves cuttingsome of the sensory nerve fibres that come from the muscles and enter the spinal cord.

While it’s a fairly invasive procedure, out of the more than 3000 operations performed at the hospital, only four patients had suffered mild complications.

Hugo is on the waiting list to have the surgery in October.


The ideal recommended age for the SDR surgery is between three and four years old, in order to have the best results.

“I feel pretty confident, said Simmons. “He’s been for an assessment through the doctors in the US and we’re happy with their analysis and the potential for a better quality of life.”

“So it’s not that it can’t be done, it’s just about how we can get it done.”

The ideal recommended age for the surgery is between three and four years old, putting time pressure on the family to get the money together as fast as possible, through grants and crowd funding.

Simmons said she had reservations about setting up a give-a-little page and sharing her son’s story with the world.

“This is really out of my comfort zone … Even just setting up a Facebook page for Hugo was a bit daunting.”

“That’s the harsh reality, I never asked for this but I can do something about it, make a change to one person and educate a community at the same time.”

More than 7000 people have cerebral palsy in New Zealand with a third of all suffers under the age of 21, however without dedicated specialists, treatment options are limited.

“Our medical team definitely try their best and they know what they know but this centre [in the US] only deals with kids with cerebral palsy,that’s all they look at.

“Sometimes I struggle with the answers I get here because actually there’s a lot of options out there.”

Simmons was also exploring various grant providers to help pay for the surgerywhich had, so far, proved difficult.

“That problem that we’re having with them is that he doesn’t meet specific criteria, so he’s too little, too young in age those kinds of things.”

She remained hopeful enough money would be secured in time for the tentative surgery date, making for a good end to a busy year for the family.

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How Can We Motivate Healthcare Professionals to Do More Research? – Cerebral Palsy News Today

Posted: at 6:52 pm

In July, BNS staff writerPatricia Inacio wrote a story discussing why and where children with cerebral palsy need more pain management. The article states that children with CP often have pain that is overlooked by caregivers and therapists. It discusses the importance of assessing the pain level of achild because pain occurs frequently and can be made worse by treatments. Reading this instantly struck a chord with me; I definitely was that child, and at the time I did not have the vocabulary to put into words how I was feeling.

But thestudythis article was based on focused only on children with severe cerebral palsy and those who were non-ambulatory. While I found the research to be educational and accurate, these 240 children are not enough to get the full picture, and readers could miss out on a wealth of information about everyone on the cerebral palsy spectrum.

I have a mild case of cerebral palsy. I walk with a limp and use various assistive devices depending on what I need at the time. While I also have hip and joint pain, like the children in this study, people like me werent discussed.

Recently, I was having a conversation with my specialist about what happens to me now. I am an adult aging out of the system meant to care for me. Im 22 and still seeing my pediatric specialist while she searches for other options for me. I am amazed that resources and information are this scarce for people with disabilities, even for me, someone with a mild case. How can resources be so limited when one in five people today have a disability? Some 15 percent of the worlds population is disabled. Thats more than 1 billion people.

It gets worse. My doctor told me that a lot of her adult patients are homeless. There is such limited research and care for people after their caregivers pass away. More than 40 percent of the homeless population is disabled. This needs to change. But how?

One problem, as you can imagine, is that there simply isnt enough money coming into the hands of people who do the research or provide care for people with most disabilities. Another problem is that many of the services that aid people with disabilities have long wait times to start receiving services, and then even longer wait times to get the wheels in motion for the person to receive what they need. This is unacceptable.

But the good news is there seem to be ways we can help. Ive reached out to Paul Gross from the Cerebral Palsy Research Network to both give and receive information. I will write a column next week to update what I found. I am sure there are small resources like this for anyone who is interested in doing a Google search.

Change starts with us patients and we need to be the voice for so many who are unheard right now.


Note:Cerebral Palsy News Todayis strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician orother qualified health providerwith any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those ofCerebral Palsy News Todayor its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.

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Multi-mechanism approach to treating neonatal hypoxic ischemia – Medical Xpress

Posted: at 6:52 pm

Dorothea D. Jenkins, M.D., the senior author on the Neuropharmacology article, is a neonatologist at the Medical University of South Carolina in Charleston, SC. Credit: Medical University of South Carolina. Sarah Pack.

Hypothermia alone, the current standard of care, neuroprotects roughly 50 percent of newborns with moderate to severe hypoxic ischemia. Therefore, half of all affected newborns are left with developmental, cognitive and motor delays including cerebral palsy following injury. Clearly, newer therapies are needed that can be given in combination with hypothermia to improve outcomes.

In preclinical studies, hypothermia and anti-oxidant treatment with N-acetylcysteine (NAC) are neuroprotective following neonatal hypoxic ischemia in females, but less so in males. Addition of vitamin D to hypothermia and NAC following neonatal hypoxic ischemia improves functional outcomes and preserves brain volume in male rodents, report researchers at the Medical University of South Carolina (MUSC) in the September 1, 2017 issue of Neuropharmacology.

“These treatments may attack the problem from different angles, helping different cells at different stages of recovery,” says Dorothea Jenkins, M.D., a professor and clinician in the Department of Pediatrics at MUSC and the senior author of the article.

Hypothermia affects several different mechanisms of injury and has been shown in several clinical trials to be neuroprotective in newborns; however, it may not help the most severe babies. These newborns are left with motor and cognitive deficits that will lead to learning and memory problems by the time they begin school. In an earlier article, Jenkins showed that females with severe hypoxic ischemic injury benefit from a combination treatment of hypothermia and NAC, which provides the rate-limiting amino acid for the primary anti-oxidant in all cells. However, males did not show the same neuroprotection or functional improvement with the treatment.

Knowing that vitamin D is degraded during neuroinflammation and injury, Jenkins and her team investigated whether adding vitamin D to hypothermia and NAC would improve outcomes in a preclinical model, particularly in males. After a two-week course of this multimodal regimen, males showed a dramatic increase in sensorimotor function (50 percent to 75 percent), working memory (decreases in path length to a platform: 375 cm to 300 cm) and a decrease in animals presenting with severe brain injury volumes (80 percent to 36 percent) compared to hypothermia and NAC treatment.

Further analysis, however, revealed that those males were still not properly regulating vitamin D. Despite showing drastic improvements, males still had markers of neuroinflammation and still degraded vitamin D while undergoing treatment. This was not true in the females, in whom proper regulation of vitamin D was restored. This sex difference is still currently under investigation and will be the focus of future investigation from this group.

This study revealed that both male and female newborn rodents are vitamin D deficient, which may be particularly important during crucial developmental periods as well as after brain injury.

“We don’t test hypoxic ischemic injury babies for vitamin D deficiency and we don’t treat it,” says Jenkins. “That probably needs to change.”

Tests to measure vitamin D levels are no longer slow and testing would be an easy change that could be made to standard protocols to determine if the newborns are deficient.

Jenkins and her team plan to build upon these results with preclinical and clinical studies aimed at understanding the injury mechanisms underlying hypoxic ischemia and how they differ in males and females. The ultimate goal would be to fine tune treatment based on sex.

“It’s an interesting possibilitywe might need different combination therapies for males and females,” says Jenkins.

Explore further: Hypothermia after stroke reduces dynamin levels and neuronal cell death

More information: Danielle W. Lowe et al, Vitamin D improves functional outcomes in neonatal hypoxic ischemic male rats treated with N -acetylcysteine and hypothermia, Neuropharmacology (2017). DOI: 10.1016/j.neuropharm.2017.06.004

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Prime Minister Justin Trudeau says he’s excited about having two ministers teaming up on the Indigenous Affairs … –

Posted: August 29, 2017 at 7:45 am
Prime Minister Justin Trudeau says he's excited about having two ministers teaming up on the Indigenous Affairs
Canadian golfer Brooke Henderson finished tied for 12th at the CP Women's Open in Ottawa on Sunday. The 19-year-old from Smiths Falls, … Jadine Baldwin says some people don't see her as a person due to her cerebral palsy. Baldwin and another teen, …

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A New Way for Doctors to Share Their Medical Mysteries – WIRED

Posted: August 28, 2017 at 11:44 am

In Gerald Grants line of work, there isnt such a thing as an average patient. As a chief of pediatric neurosurgery at Stanford University Medical Center, the children that come into his operating room are unique, each requiring a complex surgical procedure tailored to the architecture of a young brain.

But that doesnt mean he cant learn from what other people have done. Grants always searching for similar cases to give his patients the best possible shot. And more and more hes finding those answers not in prestigious, paywalled publications like the Journal of Neurosurgery (of whose editorial board he is a member), but on the freely available pages of an upstart publishing platform modeled after, of all things, Turbotax.

The Cureus Journal of Medical Science (thats pronounced curious) is the brainchild of one of Grants colleagues at Stanford, a fellow neurosurgeon named John Adler. Hes on a mission to build the worlds most comprehensive library of medical case studies. Cureus is the first and only peer-reviewed publication with step-by-step article templates for authorswhich dramatically speeds up publication times. (Just like your tax software!) If case studies are published in weeks instead of months, that means millions more medical lessons to learn from.

The science of medicine is all about power in numbers. Big cohorts, long-term trials, and lots of money ensure that most treatments will work for most people with a disease. But the practice of medicine is all about individuals. And case reportsdetailed accounts of an individual patients symptoms, diagnosis, and treatment responseare, by definition, outliers. So theres a healthy (and long-standing) debate about where in the hierarchy of evidence they should sit.

Practicing physicians like Grant and Adler tend to argue for the educational value of case reports. What seems like a one-off might actually fall into a patternbut how will anyone know if no one writes it down? Most case reports are undocumented beyond just two surgeons talking over a scrub sink, says Adler. Not enough of those stories get told. Biomedical researchers and subscription-based journal editors tend to spurn case reports, in no small part because of how rarely they get cited. Paywalled journals, like dead tree newspapers, only have so much space to print articles. And they want to make every column count.

But the digitization of peer-reviewed publishing is changing that. Since 2011, the number of journals that focus on case reports has tripled. Thirty years ago we didnt have ways to do it, says Adler. But now we have control over the floodgates. Most case report journals are open accessmeaning the articles arent behind a paywall. Instead, the authors pay a publishing fee, usually a few thousand dollars, to cover editors salaries and other overhead expenses.

As WIRED has covered, this model is easily and often exploited by predatory publishers, companies that solicit authors directly, collect their fees, and then dont follow through with promises of proper peer-review and article indexing. According to Katherine Akers, a biomedical research specialist at Wayne State University and editor in chief of the Journal of the Medical Library Association, approximately half of the publishers of medical case report journals engage in predatory practices. Thats why she tends to view any new publications, including Cureus, with a healthy dose of skepticism. For the most part, this one actually looks okay, she says, noting that Cureus is totally fee-free and indexed in PubMedthe database most used by biomedical researchers to find interesting papers relevant to their interests.

But there is one red flag.

For most reputable biomedical journals, the process of reviewing an article takes about three hours. Cureus boasts that with its easy-to-use form, reviews take no more than an hour to complete. Thats really fast, says Akers. Usually thats a warning sign that these articles arent being looked at that rigorously. Cureus says its review process only verifies the basic scientific credibility of a report. And Grant agreed that the bar to peer review might indeed be a little bit lower on Cureus than elsewhere. But when it comes to case reports, he says that might actually be OK.

In our world, were missing a lot of the science because so many journals dont see case reports as publishable, says Grant. But these rare one-offs could become really interesting if they were all reported, instead of just passed around by word of mouth. I dont think it dilutes the literature at all.

Adler, with his goal of publishing tens of millions of articles a year on Cureus, is obviously ambivalent on the dilution question. But thats because his team built another tool for telling the good from the bad. Once a paper has been published, any of the platforms 10,000-some users can leave comments and rate the papers quality and clinical significance on a scale of one to ten. The idea, Adler says, is not unlike estimating the number of marbles in a jar. If you ask a few people to guess, you get wildly different numbers. But ask enough people you eventually wind up with an average thats close to the real answer.

With enough data, Cureus could be more than just a publishing platform: It could become a prediction engine. Because case reports are mostly about rare, isolated events, it can take years, even decades to find patterns. Adler envisions his crowd-sourced metric as a way to arrive at that answer sooner.

But to do that, he needs a lot more articles, and a lot more data. Since launching in December of 2012, Cureus has published about 1,600 articles, and it currently publishes about 25 per week. At that rate, it will take more than 100 years to hit 1 million reports. And its hard to get doctors to spend as much time rating reports as they do liking Facebook posts and Twitter threads. Right now less than 60 percent of Cureus articles have been rated more than once.

On the other hand, articles dont need upvotes to be useful in operating rooms. A few months ago, a family brought their 13-year-old daughter in to see Grant. She was suffering from cerebral palsy; Her muscles were in a near constant state of contraction because of a missed connection between sensory nerves in the spinal cord and the brain. Grant realized the best course of action was probably a procedure called a selective dorsal rhizotomy, which would require him to separate out the nerves that worked from the ones that were misfiring, and then cut out only the dysfunctional ones. But because its so invasive (and expensive), he wanted to make sure the effects would last long after the operation.

So he logged on to Cureus. Doctors at the Washington University School of Medicine in St. Louis, he found, had performed the same procedure on 94 patients between the years 1989 and 1999. And they followed up with them 20 years later. Nearly 90 percent of the patients said theyd recommend the procedure; they could move better, they had less pain, and the effects were indeed long lasting. That kind of data is hard to get into a high impact journal, says Grant. But in the clinic, this is the kind of stuff my patients are asking me. These are practical questions. And these reports are able to address them.

Grant performed the surgery. And so far, his patient is doing very well.

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A New Way for Doctors to Share Their Medical Mysteries – WIRED

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