We at the Brain Injury Network survivor advocacy organization recommend the retirement of the term Persistent Vegetative State. In lieu of PVS, we ask that the medical community adopt the term “Persistent Wakeful but Unaware State” (PWUS). This term includes the requisite components of the diagnosis which are wakefulness yet unawareness. In the alternative, we have noted that on occasion the term Persistent Unaware State (PUS) is used, but it is not quite as illustrative as PWUS, in our lay persons’ opinion. However, it is clear to us, the brain injury survivor community that neither PWUS nor PUS would be so insensitive, dehumanizing or charged a term as PVS. Source: Brain Injury Network
Policy Statement from the Brain Injury Survivor Community Regarding Post-Acute Medical Environments, Assisted Living Facilities and Nursing Home Placements for People with Brain Injury; Use of Psychotropic Drugs
The Brain Injury Network, a USA national and international nonprofit organization operated by and for brain injury survivors, is pleased to announce that two new public policies were approved by the Board of Directors 12-11-10. The board members are brain injury survivors. These are the policies people with brain injuries would like to see promoted by the public sector. This is a link to the policy entitled: Privacy Settings on Web Sites Designed for Brain Injury Survivors http://braininjurynetwork.org/publicpolicy/privacysettings.html
The Brain Injury Network, a USA national and international nonprofit organization operated by and for brain injury survivors, is pleased to announce that two new public policies were approved by the Board of Directors 12-11-10. The board members are brain injury survivors. These are the policies people with brain injuries would like to see promoted by the public sector. This is a link to the policy entitled Post-Acute Medical Environments, Assisted Living Facilities and Nursing Home Placements for People with Brain Injury; Use of Psychotropic Drugs.
From: Traci Paulk Sent: Thursday, November 18, 2010 10:22 AM To: firstname.lastname@example.org Subject: Paul G. Allen Family Foundation Launches Allen Distinguished Investigators Awards, Announces Grants Totaling More than $9 Million
Today the Paul G. Allen Family Foundation, created by Microsoft co-founder Paul Allen, launched a new program to advance important neuroscience and cellular engineering research: the Allen Distinguished Investigator Awards. Through the program, grants totaling more than $9 million are being awarded to select researchers who are furthering scientific programs with potential for major breakthroughs (and who have struggled to find funding through traditional resources). I thought the Brain Injury Network might be interested in this news -- I've included a press release with more details below.
FOR IMMEDIATE RELEASE
First Allen Distinguished Investigators Named
Paul G. Allen Family Foundation Announces Seven Grants Totaling $9.4 Million for Scientific Research
SEATTLE, Wash. “November 18, 2010“ The Paul G. Allen Family Foundation today launched a program to advance important neuroscience and cellular engineering research. The Allen Distinguished Investigator Awards will fund seven researchers at universities and laboratories in Washington, California, Massachusetts and New York.
The grants total $9.4 million and will be paid over three years.
A year ago, I started searching for programs with potential for major breakthroughs but which had struggled to find funding through traditional sources, said Paul G. Allen. The inaugural Distinguished Investigators are working on some of the most exciting research in biology and neurology and I'm proud to be able to help keep that work going.
The grants are awarded to the institutions where the researchers work; the University of Washington, California Institute of Technology, Massachusetts Institute of Technology, Stanford University and Cold Spring Harbor Laboratory. Award recipients and projects funded include:
David Anderson, Seymour Benzer Professor of Biology & Investigator, Howard Hughes Medical Institute, California Institute of Technology ($1.6 million)
Project Title: Genetic identification of attack neurons in the mouse Dr. Anderson is working to localize, identify, characterize, and turn on neurons in the hypothalamus associated with attack and bring the study of aggression into the modern molecular era.
Edward S. Boyden, Benesse Career Development Professor, MIT Media Lab and associate member, McGovern Institute for Brain Research at MIT ($1.3 million)
Project Title: Massively Parallel, Three-Dimensional, Circuitwide Recording of Neural Activity Dr. Boyden, who heads the MIT Media Lab's Synthetic Neurobiology research group, is inventing new devices for creating real-time electrical maps of the brain in three dimensions.
Michael Dickinson, Benjamin Hall Endowed Chair in Basic Life Sciences, University of Washington ($2.0 million)
Project Title: Ethomics: A Technology-driven Approach to Study the Genetic and Neural Basis of Behavior Using the fruit fly, or D. melangaster, Professor Dickinson is working to develop new instruments to expand the body of knowledge in the field of measuring and quantifying complex group behavior in the relatively new field of study called ethomics.
Christof Koch, Lois and Victor Troendle Professor of Cognitive and Behavioral Biology, California Institute of Technology ($600,000)
Project Title: Evaluating Connectomes Using Measures of Complexity and Synergy
Professor Koch studies information processing by neural systems, using computational and theoretical approaches. He will specifically analyze the locomotion network in a worm, C. elegans, with an eye toward assessing the information flow in the neural network that leads to a clearly measurable behavior.
Jennifer Nemhauser, Assistant Professor, University of Washington ($1.4 million)
Project Title: Reprogramming Cells with Plant-derived Signaling Pathways
Dr. Nemhauser aims to reverse engineer a cell-to-cell communication system from plants, construct a modular molecular signal processing toolbox for synthetic biology, and to use the toolbox to genetically engineer the single celled organism S. cerevisiae, to exhibit multi-celled behavior.
Mark Schnitzer, Associate Professor & Investigator, Howard Hughes Medical Institute, Stanford University ($880,000)
Project Title: Massively Parallel Brain Imaging in Mouse Models of Human Brain Disease
Professor Schnitzer's research will strive to develop miniaturized, mass-producible, fluorescence microscopes that can create real-time imaging of neurons in the brain. The data will be used to unravel the neural and cellular basis of schizophrenia.
Tony Zador, Professor of Biology and Program Chair in Neuroscience, Cold Spring Harbor Laboratory ($1.6 million)
Project Title: Sequencing the connectome: A fundamentally new way of determining the brain's wiring diagram
Professor Zador proposes to develop a method for mapping the wiring diagram of neural circuits using high-throughput DNA sequencing technology.
Susan M. Coliton, Vice President of The Paul G. Allen Family Foundation, said, "One of the Foundation's goals is to support projects that create new knowledge about ourselves and our universe. Making investments in early stage, cutting-edge research leverages both our funding and the intellectual capital of talented scientists."We couldn't be more thrilled about the potential of this inaugural group of Allen Distinguished Investigators."
The research also complements work being done by the Allen Institute for Brain Science. The Institute is conducting leading-edge research, including development of a 3-D genetic map of the human brain. The data, made available to researchers without cost, will shed light on many neurologically based conditions, including behavioral dysfunction and diseases such as Parkinson's and Alzheimer's.
Earlier this year, Allen said that he will leave a majority of his estate to philanthropy, including to continue the work of the brain institute and the family foundation.
2010 Marks 20th Anniversary of Paul G. Allen Family Foundation Over the past 20 years, Paul Allen's contributions to the Foundation have resulted in more than 3,000 grants totaling over $400 million. In addition to contributions to his family foundation, he has provided $600 million directly to nonprofits he has founded, including the Allen Institute for Brain Science and the Experience Music Project, for a total of over $1 billion in personal giving.
The Paul G. Allen Family Foundation is a longstanding supporter of nonprofit organizations focused on making positive and measurable change. The Foundation's vision for transforming lives and building healthy communities guides its five priority program funding areas, which include nurturing the arts, engaging children in learning, addressing the needs of vulnerable populations, advancing scientific and technological discoveries, and providing economic relief amid tough economic times.
You can learn more about the Paul G. Allen Family Foundation at www.pgafamilyfoundation.org.
To read a special report celebrating the Foundation's 20 years of giving, go to: http://www.pgafamilyfoundation.org/decadereport/
More about the inaugural Allen Distinguished Investigators research projects:
David Anderson: Dr. Anderson's project is aimed at identifying specific classes of neurons that control emotional behaviors in mice, using powerful genetic tools. If such neurons can be identified, it will greatly facilitate the study of how they are wired into the brain's circuitry, and how this circuitry is affected by genetic and environmental factors that influence emotional behavior. Such studies could potentially lead to the development of new treatments for emotional disorders. http://cns.caltech.edu/people/faculty/anderson.html
Edward S. Boyden: Dr. Boyden is devising a new kind of probe for recording the activity of neurons distributed in multiple sites in the brain, in order to open up the exploration of how distributed neurons work together to implement behavior, and how these computations go awry in pathological states.Â Such detailed descriptions of brain dynamics will support the discovery of new targets for therapeutically improving brain function in neurological and psychiatric disorders, while minimizing side effects. http://syntheticneurobiology.org/
Michael Dickinson: Dr. Dickinson's work is aimed at developing new technology for measuring complex behavior with the ease, reliability, and power of approaches used to sequence and manipulate genomes. The research will focus on the fruit fly, Drosophila, which has emerged as a powerful genetic model organism in the study of general brain function. The work will advance the field of neuroscience by finalizing the intellectual and technological synthesis necessary to understand brain function at the genetic, cellular, and organismal levels. In doing so, the research should provide insight into many biological processes involved in mental health disorders. http://www.dickinson.caltech.edu/
Christof Koch: Dr. Koch's group seeks to characterize the complexity of the connectome, that is the complete set of connections among all processing elements of a particular nervous system, and its ability to integrate information using a combination of analysis and computation. They propose that integrated information “a measure that uses variables such as conditional entropy from information theory - is a critical property of nervous systems. The Koch lab believes that evolution by natural selection gives rise to a systematic increase in the integrated information of brains. They propose to demonstrate this for both simulated artificial networks that evolve and/or learn as well as for extant neurobiological networks“ here the known locomotion network of the roundworm Caenorhabditis elegans. http://www.klab.caltech.edu/~koch/
Jennifer Nemhauser: Dr. Nemhauser's project is to reverse engineer the cellular response to the plant hormone auxin “central to nearly every aspect of higher plant life and evolution“ using single-celled yeast as a testbed. This approach will allow them to study each part of the auxin response circuit in detail and use this knowledge to build entirely new circuits for a wide range of possible applications. http://protist.biology.washington.edu/nemhauser/people.htm
Mark Schnitzer: Professors Mark Schnitzer and Abbas El Gamal, along with Dr. Kunal Ghosh and their collaborators, are developing enabling technologies for large-scale brain imaging studies in mouse models of human brain disease. They will develop mass-producible, miniaturized optical microscopes for imaging neural activity in freely behaving mice. Such optical recordingsÂ will be used to gain crucial knowledge of the normal patterns of neural circuit dynamics and how these patterns may go awry in disease states. This is a key step towards the design of novel therapeutic and corrective strategies. http://pyramidal.stanford.edu/
Tony Zador: Dr. Zador proposes to develop a highly efficient method for determining the neural wiring diagram for any genetically accessible organism. Such a method would transform neuroscience research. The brain is a network of incredible complexity, consisting of billions of neurons connected by trillions of synapses. The details of these connections--the precise wiring diagram specifying which neurons form synaptic connections with which other neurons--are crucial in determining brain function. However, for technical reasons the details of this wiring diagram have remained inaccessible. http://zadorlab.cshl.edu/
Listing added: Nov 18, 2010)
Brain Injury Network Article: Protect Your Privacy and Guard Your Confidential Information On-Line! Summary: If you want to join social on-line communities, check them out, thoroughly, before you join. Also, find out what kind of credentials the administrators of the site have, if you can. And when in on-line groups or communities: (1) Sign up using an alias name. (2) Use a private profile. (3) Do not give out your address, phone number, or birth date. (4) Do not use your real name or your parent’s or other relatives’ last names in discussions. (5) Don’t use your primary email address, especially if it contains your actual name. Create easily disposable secondary (subaccount) email addresses to use instead. (6) Don’t share medical data about yourself by filling out on-line forms from social communities. For example, don’t share your insurance particulars, your doctor’s name, your medication list, etc. (7) If a site allows you to modify your privacy and archival settings (a good sign) check them, because chances are the default setting is to allow your content to be accessible to the entire Internet community, and you may wish to tighten up who may view your posts. (8) Just remember that if you share any content with anyone, anyone at all, he or she will be able to share your material elsewhere (even though that would be impolite it happens all of the time), so be careful what you write on the Internet. You never know where it will end up, and once you have written something it may be on the Internet for eternity.
Brain Injury Network Post-Secondary Brain Injury (B. I.) Program Recommendations These program recommendations are for service providers conducting post-secondary educational programs for adult students with cognitive challenges that have resulted from traumatic brain injury, acquired brain injury and other causes. (Published 2006.) "We would like all chancellors, universities, colleges, state-wide college networks, AHEAD (the Association on Higher Education and Disability), the California Community Colleges Chancellor's Office and CAPED (the California Association for Post-Secondary Education and Disability) to take the following actions and instigate appropriate procedures for students with brain injuries in all colleges under their jurisdiction, direction, influence or control. Create system wide protocols regarding adult college students with cognitive challenges for all of the colleges under your jurisdiction, influence, direction or control...."
On May 13, 2009 the patient advocacy organization Brain Injury Network (BIN) proposed a Post Traumatic Brain Injury Syndrome (PTBIS) brain injury classification. This December 5, 2009 letter written by President and Executive Director Sue Hultberg from the BIN asks the medical community to pursue such a classification and definition. Proposed (draft) definition: Proposed Definition: Post-Traumatic Brain Injury Syndrome, also known as PTBIS, is a set of symptoms that a person may experience for weeks, months, years or life after a traumatic brain injury (TBI). Some symptoms may manifest a substantial period of time (months or years) after TBI. PTBIS may occur subsequent to mild, moderate, and severe cases of traumatic brain injury. The condition can cause a variety of symptoms: cognitive, such as difficulty attending, concentrating, executing, focusing, judging, processing, remembering, speaking, tracking, or understanding; behavioral, such as emotional lability, irritability, mood swings, or outbursts; or physical, such as endocrine dysfunction, fatigue, headache, incontinency, nausea, perceptual-motor disorders, seizures, sleep disorders, somatosensory disorders or tinnitus. There are many other possible symptoms. There is no treatment for PTBIS itself; however, symptoms can be treated. It is partially known what causes PTBIS. Physiological brain damage from traumatic brain injury causes PTBIS. PTBIS may periodically cause secondary psychiatric disorders, such as depression or isolating behaviors, to exhibit. Note: This definition comes from the brain injury survivor community and we would appreciate it if the medical community would step forward to develop this further. Contact: email@example.com
What is post-traumatic epilepsy ? " A 'seizure' is a change in consciousness or behavior that is a result of an electrical disturbance in the brain....Specifically, people who experience a traumatic brain injury from any kind of war wound are at significant risk to develop epilepsy." FAC's regarding Post-Traumatic Epilepsy Source: American Epilepsy Society
PEAT (Planning and Executive Assistant and Trainer). "PEAT™ is a handheld computer system that provides cueing and scheduling assistance for individuals with memory, attention, and cognitive disorders. PEAT users include patients with traumatic brain injury, stroke, hypoxia, neurodegenerative conditions including MS, Alzheimer's disease and attention deficit and hyperactivity disorder (ADHD)." It is designed to increase the independence and quality of life for people with cognitive disorders due to brain injury.... This device is sold by Attention Control Systems, Inc. - Computerized Planning for People with Cognitive Disorders.
Listing added: Nov 7, 2009)
Brain-derived neurotrophic factor (BDNF) has been suggested to play pivotal roles in HD ..... both reagents markedly suppressed BDNF-induced neuroprotection. .... Taipei City Government (96002-62-069) in Taiwan to Ding-I Yang. ...