Friday, March 29, 2013

Noah is doing wonderful on his ipad.

His control on the left side astounds me with so much of the temporal lobe missing. He loves working on peekaboo barn and flashcards and has worked really hard to answer Yes and No. I am so proud of him. Go Noah!!

Monday, March 25, 2013

Noahs gtube to mic-key button

April 17th Noah has to be put back under for his button to be placed. Last time he went under what was suppose to be a 2 day stay ended up being a three week hospital visit because of how bad Noah's lungs are from scoliosis.
Hoping this one goes much smoother.

Our new website is up

Thursday, March 21, 2013

other countries are doing research for damaged brains

Neural Stem Cells in Development and for Brain Repair

May 4 - 12, 2013

Coordinator: Elena Cattaneo

University of Milan, Italy

Arturo Alvarez-Buylla, University of California, San Francisco, USA
Oliver Brüstle , University of Bonn, Germany
Pete Coffey, University College London, UK
Gianvito Martino, San Raffaele Scientific Institute, Milan, Italy
Anders Björklund, University of Lund, Sweden
Lorenz Studer, Memorial Sloan Kettering Cancer Center, New York, USA
Hynek Wichterle, Columbia University, New York, USA

A number of neurological diseases are characterized by the loss of individual neuronal subtypes and/or specialized glial cells. The ongoing effort is to understand the underlying pathophysiology in an attempt to identify suitable drug targets. Opportunities have emerged within the stem cell field. Unprecedented advances have been made in our understanding of stem cells and through them much can be learned about the physiology and pathophysiology of the cells that degenerate in different brain disorders with the ultimate goal of delivering therapeutically relevant stem cells that could ameliorate the clinical outcome. The Course will bring together a collection of investigators who are at the forefront of their field and will showcase research at the frontiers of neural stem cells for neurorepair.
Stem cells exist in the developing and adult nervous system and are able to generate neuronal and glial cells both in vivo and in vitro. The first focus of the Course will be to familiarize participants with the early results that have led to the identification, characterization, and isolation of neural stem cells. The data that clarify the nature of the neural stem cell niche will also be discussed. Specific aspects of human brain development that are relevant for directing stem cells into specific neuronal and glial fates will be analyzed with highlights on recent novel important perspectives. Critical in these strategies is knowledge of the intimate developmental mechanisms contributing to the generation of the different cell types of the nervous system in vivo and the possibility to implement them in vitro.
Another major focus will be the potential of human pluripotent stem cells as a source of neurons and glial cells for mechanistic, transplantation and drug screening approaches. The Faculty members are the investigators who have pioneered the very first attempts at generating specialized neurons from human embryonic stem (ES) cells. They have also identified alternative scalable sources of neural progenitors. Accordingly, human ES and induced pluripotent stem (iPS) cell-derived neural stem cell populations have been obtained which can be expanded to homogeneity, while retaining the capacity to mature into functional neurons. The participants will hear these data first-hand from the leading investigators actively involved in cutting-edge research and stress will be placed on the most recent achievements obtained with human iPS/directly reprogrammed cells for neurological diseases.
Many other emerging features of the stem cell field will be object of analysis and discussion throughout the Course. For example, recent discoveries have identified transcription factors and morphogens critical for successful phenotype specification and differentiation of therapeutically relevant dopaminergic and striatal medium sized spiny neurons from human pluripotent stem cells. Distinct subtypes of motor neurons can also be derived from ES/iPS cells, allowing the study of the mechanisms that regulate the growth of motor axons towards their specific targets. These studies will be discussed in the context of the current attempts at developing stem cell-based models and therapies for diseases such as Parkinson's and Huntington's disease, amyotrophic lateral sclerosis and spinal muscular atrophy.
One emerging avenue of research under intense investigation is the systemic or intracerebral delivery of neural stem and progenitor cells or their endogenous activation in an attempt to develop potential treatments for diseases such as multiple sclerosis and stroke. These studies will be discussed extensively and the evidence of an unexpected cross-talk between neural stem cells and immune cells in the nervous system will be presented: this specific aspect represents a very promising key to better brain repair.
Despite public hope that stem cells -and especially adult stem cells- may be the cure for many (if not all) diseases, in reality it is very well possible that evidence supporting their use will be obtained for only a limited number of conditions. In the face of such high expectations it is the precise responsibility of the scientific community that only results of rigorously conducted preclinical studies are transferred to the clinic through a rigorous evidence-based translational approach. A wealth of such evidence obtained in animals in the '90s has lead to the first clinical trials in Parkinson's disease using grafts of fetal dopaminergic progenitors. These studies have demonstrated that effective repair can be achieved by neural transplantation: evidence and knowledge acquired from these early studies and from more recent transplantation trials in Parkinson's disease will be reviewed with dedicated attention to the current status quo. Also, the most recent phase I and phase II trials in macula degeneration using hES cell-derived retinal cells will be reviewed.
It is important in this respect to consider that the development of clinically competitive stem cell therapies for neurological disorders is requiring more time and efforts than anticipated. The Faculties will thoroughly discuss the specific puzzles, paradoxes and conflicts that stem cell research poses in an open atmosphere and novel perspectives will be highlighted.
The Course will provide participants with a thorough understanding of the identity, properties, location and characteristics of growth and differentiation of pluripotent stem cells and multipotent neural stem cells. Participants will also have the opportunity to acquire more in depth knowledge of novel, cutting-edge approaches and technologies now available to derive specific human cell types of the nervous system.
In all sections of the Course, a strong emphasis will be placed on critical analysis to provide not only a thorough understanding of the great potential but also of the difficulties and pitfalls present in this highly sensitive field. Participation in the Course will not only provide an essential conceptual and methodological framework for anyone intending to pursue rigorous research but will also build the foundation for maintaining the high standards and the ethical dimension that are necessary in order to translate validated research findings into new regenerative therapies for presently incurable diseases.

New ways science finds to help and repair stroke victems

Science News

... from universities, journals, and other research organizations

Oxygen Chamber Can Boost Brain Repair Years After Stroke or Trauma

Jan. 23, 2013 — Stroke, traumatic injury, and metabolic disorder are major causes of brain damage and permanent disabilities, including motor dysfunction, psychological disorders, memory loss, and more. Current therapy and rehab programs aim to help patients heal, but they often have limited success.
Now Dr. Shai Efrati of Tel Aviv University's Sackler Faculty of Medicine has found a way to restore a significant amount of neurological function in brain tissue thought to be chronically damaged -- even years after initial injury. Theorizing that high levels of oxygen could reinvigorate dormant neurons, Dr. Efrati and his fellow researchers, including Prof. Eshel Ben-Jacob of TAU's School of Physics and Astronomy and the Sagol School of Neuroscience, recruited post-stroke patients for hyperbaric oxygen therapy (HBOT) -- sessions in high pressure chambers that contain oxygen-rich air -- which increases oxygen levels in the body tenfold.
Analysis of brain imaging showed significantly increased neuronal activity after a two-month period of HBOT treatment compared to control periods of non-treatment, reported Dr. Efrati in PLoS ONE. Patients experienced improvements such as a reversal of paralysis, increased sensation, and renewed use of language. These changes can make a world of difference in daily life, helping patients recover their independence and complete tasks such as bathing, cooking, climbing stairs, or reading a book.
Oxygen breathes new life into neurons
According to Dr. Efrati, there are several degrees of brain injury. Neurons impacted by metabolic dysfunction have the energy to stay alive, but not enough to fire electric signals, he explains. HBOT aims to increase the supply of energy to these cells.
The brain consumes 20 percent of the body's oxygen, but that is only enough oxygen to operate five to ten percent of neurons at any one time. The regeneration process requires much more energy. The tenfold increase in oxygen levels during HBOT treatment supplies the necessary energy for rebuilding neuronal connections and stimulating inactive neurons to facilitate the healing process, explains Dr. Efrati.
For their study, the researchers sought post stroke patients whose condition was no longer improving. To assess the potential impact of HBOT treatment, the anatomical features and functionality of the brain were evaluated using a combination of CT scans to identify necrotic tissue, and SPECT scans to determine the metabolic activity level of the neurons surrounding damaged areas.
Seventy-four participants spanning 6 to 36 months post-stroke were divided into two groups. The first treatment group received HBOT from the beginning of the study, and the second received no treatment for two months, then received a two-month period of HBOT treatment. Treatment consisted of 40 two-hour sessions five times weekly in high pressure chambers containing oxygen-rich air. The results indicate that HBOT treatment can lead to significant improvement in brain function in post stroke patients even at chronically late stages, helping neurons strengthen and build new connections in damaged regions.
A potential avenue for prevention
Although the study focuses on patients only through three years post-stroke, Dr. Efrati has seen similar improvement in patients whose brain injuries occurred up to 20 years before, belying the concept that the brain has a limited window for growth and change. "The findings challenge the leading paradigm since they demonstrate beyond any doubt that neuroplasticity can still be activated for months and years after acute brain injury, thus revealing that many aspects of the brain remain plastic into adulthood," says Prof. Ben-Jacob.
This study also "opens the gate into a new territory of treatment," adds Dr. Efrati. The researchers are currently conducting a study on the benefits of HBOT for those with traumatic brain injury. This treatment also has potential as an anti-aging therapy, applicable in other disorders such as Alzheimer's disease and vascular dementia at their early stages.
"It is now understood that many brain disorders are related to inefficient energy supply to the brain," explains Dr. Efrati. "HBOT treatment could right such metabolic abnormalities before the onset of full dementia, where there is still potential for recovery."
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The above story is reprinted from materials provided byAmerican Friends of Tel Aviv University.
Note: Materials may be edited for content and length. For further information, please contact the source cited above.

Journal Reference:
  1. Shai Efrati, Gregori Fishlev, Yair Bechor, Olga Volkov, Jacob Bergan, Kostantin Kliakhandler, Izhak Kamiager, Nachum Gal, Mony Friedman, Eshel Ben-Jacob, Haim Golan. Hyperbaric Oxygen Induces Late Neuroplasticity in Post Stroke Patients - Randomized, Prospective TrialPLoS ONE, 2013; 8 (1): e53716 DOI:10.1371/journal.pone.0053716

American Friends of Tel Aviv University (2013, January 23). Oxygen chamber can boost brain repair years after stroke or trauma.ScienceDaily. Retrieved March 21, 2013, from­/releases/2013/01/130123144218.htm
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Disclaimer: This article is not intended to provide medical advice, diagnosis or treatment. Views expressed here do not necessarily reflect those of ScienceDaily or its staff.

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Noahscart looking for the right research


Release Date: 02/05/2013
Study findings suggest physical and pharmacological solutions for human stroke victims
Johns Hopkins researchers have found that mice can recover from physically debilitating strokes that damage the primary motor cortex, the region of the brain that controls most movement in the body, if the rodents are quickly subjected to physical conditioning that rapidly “rewires” a different part of the brain to take over lost function.
Their research, featuring precise, intense and early treatment, and tantalizing clues to the role of a specific brain area in stroke recovery, is described online in the journal Stroke.
"Despite all of our approved therapies, stroke patients still have a high likelihood of ending up with deficits," says study leader Steven R. Zeiler, M.D., Ph.D., an assistant professor of neurology at the Johns Hopkins University School of Medicine. "This research allows us the opportunity to test meaningful training and pharmacological ways to encourage recovery of function, and should impact the care of patients."
With improved acute care for stroke, more patients are surviving. Still, as many as 60 percent are left with diminished use of an arm or leg, and one-third need placement in a long-term care facility. The economic cost of disability translates to more than $30 billion in annual care.
For their study, the researchers first trained normal but hungry mice to reach for and grab pellets of food in a precise way that avoided spilling the pellets and gave them the pellets as a reward. The task was difficult to master, the researchers say, but the mice reached maximum accuracy after seven to nine training days.
Then the researchers created experimental small strokes that left the mice with damage to the primary motor cortex. Predictably, the reaching and grasping precision disappeared, but a week of retraining, begun just 48 hours after the stroke, led the mice to again successfully perform the task with a degree of precision comparable to before the stroke.
Subsequent brain studies showed that although many nerve cells in the primary motor cortex were permanently damaged by the stroke, a different part of the brain called the medial premotor cortex adapted to control reaching and grasping. Zeiler says the function of the medial premotor cortex is not well-understood, but in this case it seemed to take over the functions associated with the reach-and-grab task in his experimental mice.
The researchers also report that otherwise healthy mice trained to reach and grasp pellets did not lose this ability after experiencing a stroke in the medial premotor cortex, which suggests that this part of the brain typically plays no role in those activities, and the existence of untapped levels of brain plasticity might be exploited to help human stroke victims.
Zeiler says another key finding in his research team’s mouse model was a reduction of the level of parvalbumin, a protein that marks the identity and activity of inhibitory neurons that keep the brain’s circuitry from overloading. With lower levels of parvalbumin in the medial premotor cortex, it appears the "brakes" are essentially off, allowing for the kind of activity required to reorganize and rewire the brain to take on new functions - in this case the ability to reach and grasp.
To prove that the learned functions had moved to the medial premotor cortex in the mice, the researchers induced strokes there. Again, the new skills were lost. And again, the mice could be retrained.
The research team’s next steps with their mouse model include evaluating the effect of drugs and timing of physical rehab on long-term recovery. The research could offer insight into whether humans should receive earlier and more aggressive rehab.
"In people left with deficits after a stroke, we have been asking how we can encourage the rest of the nervous system to adapt to allow true recovery," Zeiler says. "This research begins to provide us some answers."
The research was supported by a startup fund from the Johns Hopkins University School of Medicine’s Department of Neurology as well as grants from the National Institutes of Health’s National Institute of Neurological Disorders and Stroke (R01 NS052804-05 and R01 NS 39156) and the NIH’s National Institute of Mental Health (MH084020).
Other Johns Hopkins researchers involved in the study include Ellen M. Gibson, B.S.; Robert E. Hoesch, M.D., Ph.D.; Ming Y. Li, B.A.; Paul F. Worley, M.D.; Richard O’Brien, M.D., Ph.D.; and John W. Krakauer, M.D.
Media Contact:
Stephanie Desmon

Wednesday, March 13, 2013

Feeding tube and moving to a button

After 12 years of eating and drinking just fine Noah had a few issues with pneumonia this year and began refusing drinks. The feeding tube has been a huge relief on mommy and Noah made some really special friends in the hospital and even Dr birnbaum came for a visit. We are so blessed!

A boy and his frog

Our good friend Faith sent Noah a very special gift this last week. Her very own Kermit the frog was sent to Noah and he and kermie have been inseparable!!  He won't even try to go to sleep without him. Best gift ever. We love you Faith!!

Veggie tales live

What a great time meeting the promise radio station and seeing veggie tales live in Jacksonville. Noah had a blast and we handed out 150 flyers about schizencephaly. Looking forward to doing an interview with the promise radio station!

A pirates life

Noah's had such a great time meeting the city of St Augustine. And the outpouring of support from the community for the fundraiser has been amazing.
The Marina has donated a jet ski for a raffle and a skif boat and Noah got to meet the famous William mayhem. We look forward to seeing you and Noah raising the banner saying "schizencephaly awareness" that will go port to port along the eastern seaBoard until it reaches Nokia Scotia and Noah's Schiz buddy danna for her huge awareness day kick off!

Tuesday, March 12, 2013

a pirates life april 25th at the conch house in st augustine

noah has a very special day coming up  hes been invited to hoist a banner that will go from port to port that will help raise awareness for schizencephaly  join us for a day of fun with over 45 pirates and a celebration of life .including a jet ski and boat giveaway and prizes and fun  a huge announcement will be given that day as well 

Friday, March 1, 2013

A boy and his frog

Noah had a huge surprise today when we were leaving for the property up north a package arrived.
Out jumped Kermit the frog! Noah loves Kermit and this one was sent special by another little girl named Faith with schizencephaly all the way in Alaska!
What a special day and what special friends Noah has