tag:blogger.com,1999:blog-28049793027069947442024-03-20T01:09:09.095-07:00Beyond Cerebral PalsyThe Cerebral Palsy Network is a support network that offers support and networking to it's members and those in need. CPN also provides advocacy and mentoring. Our goal is to promote Unity, Knowledge and Empowerment to those individuals dealing with disabilities whether they have Cerebral Palsy, their families, friends or professionals working in the special needs field. It is also our hope to educate those who wish to learn more about special needs.The Cerebral Palsy Networkhttp://www.blogger.com/profile/10240710513642269150noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-2804979302706994744.post-85510349005708375942014-05-04T11:21:00.001-07:002014-05-04T11:21:17.832-07:00Discovered yet another "therapy" Today I was trying to finish up the last few pages of the CPN website update and came upon another "therapy" that I personally had not yet heard about so I wanted to share a bit about it with you. Along with a link. I've not done any research on it yet and invite anyone to talk about their experiences good or bad.<br />
<br />
The link is: <a href="http://www.abrcanada.com/">http://www.abrcanada.com</a><br />
<br />
It is called The ABR Method, which is short for which is short for Advanced Biomechanical Rehabilitation.<br />
Here is a short copy from their site.<br />
which is short for Advanced Biomechanical Rehabilitation<br />
<br />
<h2>
A soft, non-invasive and efficient method</h2>
<span style="color: #434aa8; font-family: 'Trebuchet MS', Arial, Helvetica, Sans-Serif; font-size: 16px; font-weight: normal;">ABR addresses…</span><br />
<h3>
1) The volumetric structure of the Hydraulic Visceral Core…</h3>
…through a method consisting of compressional techniques providing a
non-traumatic remodeling (strengthening) of the visceral fascia through
the use of a Force Transfer Medium avoiding the elastic rebound effect
of the skeletal structure.<br />
…the principle consists of delivering Biotensegral Compressional
loading (compression without distortion) to the body in order to induce
BioTensegral Counter Response (uniform diverging response).<br />
The techniques being used are…<br />
<h5>
The Manual Technique, known as the 3Qs Technique</h5>
<img alt="ABR enfants" class="alignleft" height="144" src="http://www.abrcanada.com/image_web/enfant_serviette1.jpg" title="ABR enfants" width="227" /><br />
<ul>
<li>Quasi-static movement (super slow movement delivering maximum input)</li>
<li>Quasi-spherical application (minimal area of contact, sufficient for getting a volumetric response)</li>
<li>Quasi-isotropic movement (no deformation of the surface leading to loss of efficiency)</li>
</ul>
<br />
<br />
<h5>
The ABR Machine</h5>
The ABR Machine performs as a complement to the manual exercises and
can be used in combination for efficient core strengthening. The ABR
Machine is well suited for trunk applications such as thorax, abdomen,
vertebral column or pelvis, leaving the parents and caretakers free to
concentrate on more delicate areas of the neck, face or head.<br />
Ideal to use during the night, it conveniently maximizes the number of potential working hours.<br />
The ABR Machine is also at the service of parents who simply do not
have the time and resources to implement more sophisticated and targeted
ABR Manual Exercises.<br />
<img alt="Machine ABR" height="175" src="http://www.abrcanada.com/image_web/machine_ABR.jpg" title="Machine ABr" width="173" /><img alt="" class="wp-image-1229" height="173" src="http://s395945427.onlinehome.us/wp-content/uploads/2011/08/image0011-300x200.jpg" title="image001" width="259" /><br />
<h3>
2) The fascial layers of the musculoskeletal system</h3>
… focusing on the sequential arrangement of the layers and reaching the internal weaker ones .<br />
The techniques being used are…<br />
<h5>
The Super Soft Ball Rolling Technique</h5>
Targeting fascial layers response of denser and tubular areas (thorax, vertebral column, pelvis, etc)<br />
<img alt="ABR enfants" height="144" src="http://www.abrcanada.com/image_web/enfant_serviette2.jpg" title="ABR enfants" width="227" /><br />
<h5>
The Trans-Fascial Viscoelastic Stimulation Technique</h5>
Working at the level of the outer shell of the skeletal layers,
softening and opening syndesmotic (hardly moveable) joints, creating
ability for interstitial fluid to circulate, releasing muscular
attachments and improving connection between fascial layers, encouraging
beneficial remodelling of the tissues and engage otherwise ‘dormant’
tissues.<br />
<br />
<br />
<br />
<img alt="" height="144" src="http://s395945427.onlinehome.us/wp-content/uploads/2011/08/image001.jpg" width="207" /><br />
<br />
<br />
Thoughts? Opinions? Experiences?<br />
The Cerebral Palsy Networkhttp://www.blogger.com/profile/10240710513642269150noreply@blogger.com2tag:blogger.com,1999:blog-2804979302706994744.post-90664558830356045612014-04-23T23:49:00.000-07:002014-04-23T23:49:04.682-07:00<h1 class="page-title icon" id="post-3511">
<span style="color: #93c47d;"><span style="font-size: small;"> credit for this information goes to: My Child @ <a href="http://Cerebral Palsy .Org" target="_blank">Cerebral Palsy .Org</a></span></span></h1>
<h1 class="page-title icon" id="post-3511">
<span style="color: #45818e;">Research on Cerebral Palsy</span></h1>
<div class="section">
<img alt="" src="http://cerebralpalsy.org/images/site/wide/research.jpg" /><br />
<br />
<br />
Government, non-government organizations (NGOs), community-based
organizations (CBOs) and industry organizations (disability and cerebral
palsy) perform and sponsor research on cerebral palsy, disabilities and
impairments which can greatly benefit individuals with cerebral palsy.
Studies help to understand the condition and the cause, form a basis for
improved treatment options, and are used to develop prevention
measures. Some research allows government agencies to calculate how many
individuals have the condition and predict the type and amount of
assistance required.<br />
<br />
Research is also performed on treatment and therapy options. For instance,<span style="color: #6aa84f;"> <strong>stem cell research</strong></span>
is being performed to ascertain whether damaged brain cells can be
fixed or replaced. In an experiment conducted by neurologist Evan Snyder
at Harvard Medical School, mice were injected with stem cell implants.
The results of the study indicated that missing cells were spontaneously
replaced. <br />
While it is too early to know for certain if Snyder’s results can be
replicated in children with cerebral palsy, scientists are hopeful. If
they can find a surefire way to manipulate damaged brain cells to heal
or replenish themselves, then conditions like cerebral palsy could be
treated, or perhaps reversed. <br />
<span style="color: #6aa84f;"><strong>To learn more about stem cell research, in particular, call the MyChild<small>™</small> Call Center at </strong></span>. The MyChild<small>™</small> call center has material on the following stem cell topics:<br />
<ul class="green">
<li><span style="color: #8e7cc3;"><strong>Basic information about the promise of stem cell research</strong></span></li>
<li><span style="color: #8e7cc3;"><strong>Ethical issues surrounding stem cell research</strong></span></li>
<li><span style="color: #8e7cc3;"><strong>Stem cell research programs and clinical trials at universities and institutions</strong></span></li>
<li><span style="color: #8e7cc3;"><strong>International stem cell research progress</strong></span></li>
<li><span style="color: #8e7cc3;"><strong>White House guidelines on stem cell research</strong></span></li>
<li><span style="color: #8e7cc3;"><strong>Understanding cord blood options</strong></span></li>
<li><span style="color: #8e7cc3;"><strong>Understanding blood and marrow transplantation</strong></span></li>
<li><span style="color: #8e7cc3;"><strong>Medical position statements on cord blood usage</strong></span></li>
<li><span style="color: #8e7cc3;"><strong>Medical position statements on stem cell treatment</strong></span></li>
<li><span style="color: #8e7cc3;"><strong>Types of stem cells (adult stem cells, tissue-specific, fetal, cord blood, embryonic and induced pluripotent stem cells)</strong></span></li>
<li><span style="color: #8e7cc3;"><strong>International progress in promoting stem cell research and the advancement of biomedical science</strong></span></li>
</ul>
To learn more about various other research studies and clinical
trials that can improve the lives of those with Cerebral Palsy, MyChild<small>™</small>
has compiled the following list of international and national research
entities currently conducting studies to benefit those with cerebral
palsy. MyChild<small>™</small> realizes the following list is not
all-encompassing, nor fully comprehensive, but it is a start. We hope to
add more resources in the near future.<br />
</div>
<div class="section">
<h2 id="ia">
<span style="color: #45818e;"><strong>INTERNATIONAL AGENCIES</strong></span></h2>
International agencies based outside of the United States promoting cerebral palsy research, include:<br />
<span style="color: #93c47d;"><a href="http://www.un.org/disabilities/default.asp?id=161/">United Nations (UN)</a></span>
is an international organization of over 192 member states, organized
for the purpose of furthering worldwide economic development, human
rights, international law, international security, social progress, and
world peace. WHO is a branch of the UN charged with directing and
coordinating health initiatives within the UN. United Nations Enable is
the UN website for all UN activities which further the rights and
dignity of those with disabilities.<br />
<br />
<span style="color: #93c47d;"><a href="http://www.who.int/topics/disabilities/en/">World Health Organization (WHO)</a></span>
is the United Nations’ coordinating authority for health and leadership
on global health initiatives. They shape research agendas, set norms
and standards, and articulate evidence-based policy options while
monitoring and assessing health trends.<br />
Surveillance of Cerebral Palsy in Europe (SCPE) is a collaborative
network in 14 centers in 8 countries across Europe developing a central
database of children with cerebral palsy. SCPE monitors trends,
disseminates information, and provides a collaborative framework.<br />
</div>
<div class="section">
<h2>
<span style="color: #45818e;"><strong>GOVERNMENT ORGANIZATIONS</strong></span></h2>
<h3>
<span style="color: #8e7cc3;">The U.S. Department of Health and Human Resources (HHR)</span></h3>
The U.S. Department of Health and Human Resources (HHR) is the
leading national agency dedicated to protecting the health of all
Americans, while providing essential human services. HHR maintains
several divisions that focus on research, prevention, safety, health,
and welfare including:<br />
<h4>
<span style="color: #8e7cc3;">Centers for Disease Control and Prevention (CDC)</span></h4>
<span style="color: #76a5af;"><strong>The Centers for Disease Control and Prevention (CDC)</strong>
</span> is a division of the US Department of Health and Human Services, an
organization dedicated to marketing communications for the protection of
health and disease control, injury and disability. The CDC has
conducted surveillance of birth defects, including the following three
initiatives:<br />
<span style="color: #93c47d;"><a href="http://www.cdc.gov/ncbddd/dd/maddsp.htm">Metropolitan Atlanta Development Disabilities Surveillance Program (MADDSP)</a> </span>monitors five developmental disabilities, including cerebral palsy, in Atlanta. It is the model for many other programs in US.<br />
<span style="color: #93c47d;"><a href="http://www.cdc.gov/ncbddd/autism/addm.html">Autism and Developmental Disabilities Monitoring Network (ADDM)</a> </span>tracks children with autism spectrum disorders and cerebral palsy.<br />
<span style="color: #93c47d;"><a href="http://www.cdc.gov/ncbddd/autism/caddre.html">Centers of Excellence for Autism and Developmental Disabilities Research and Epidemiology (CADDRE)</a></span> also study autism and cerebral palsy in children.<br />
<h4>
<span style="color: #a2c4c9;">Other Important HHR Research Divisions</span></h4>
<span style="color: #93c47d;"><a href="http://www.ninds.nih.gov/">National Institute of Neurological Disorders (NINDS)</a></span> is currently researching traumatic events, genetic defects and treatment protocols in cerebral palsy.<br />
<span style="color: #93c47d;"><a href="http://www.nih.gov/">National Institute of Health (NIH)</a></span>, known as one of the world’s largest research centers, NIH has the largest source of funding for medical research worldwide.<br />
<span style="color: #93c47d;"><a href="http://www.cdc.gov/ncbddd/index.html">Center on Birth Defects and Developmental Disabilities (NCBDDD)</a></span>
part of the US Centers for Disease Control and Prevention. The center
focuses on protecting people who are at increased health risk, including
those with disabilities.<br />
<span style="color: #93c47d;"><a href="http://www.hrsa.gov/">The Health Resources and Services Administration (HRSA)</a></span>
is a U.S. agency dedicated to improving access to health care services
for people who are uninsured, isolated, or medically vulnerable.<br />
<span style="color: #93c47d;"><a href="http://mchb.hrsa.gov/">Maternal and Child Health Bureau (MCHB)</a></span>
is focused on improving the health of all mothers and children by
training providers, conducting public education and outreach, and
providing support services for children with special healthcare needs.
The MCHB also offers injury prevention, newborn screening and childcare
health and safety programs.
</div>
The Cerebral Palsy Networkhttp://www.blogger.com/profile/10240710513642269150noreply@blogger.com2tag:blogger.com,1999:blog-2804979302706994744.post-13935418333938364562014-04-23T23:11:00.001-07:002014-04-23T23:28:10.556-07:00Lastest Cerebral Palsy Research<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.thecpnetwork.org/" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWDeQffHQxLQ-rZ63tyORtBO-kttzl_YKlArEfInBwTRABlnNO0mY5WkuYD8UkQ7pCBdcwmFUUfAvpyHuaeYTq0eWDpVPK8YfPe06gvHuIPr6Oaw6ousx1Gl2RLqZHyLenrvnUCyMBXyM/s1600/newcpnbanner.jpg" height="80" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.thecpnetwork.org/"><b>The Cerebral Palsy Network</b></a></td><td class="tr-caption" style="text-align: center;"><a href="http://www.thecpnetwork.org/"><b><br /></b></a></td><td class="tr-caption" style="text-align: center;"><a href="http://www.thecpnetwork.org/"><b><br /></b></a></td><td class="tr-caption" style="text-align: center;"><b><br /></b></td></tr>
</tbody></table>
<br />
<br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><b>Here is the latest Research from the <a href="http://cpirf.org/about-cpirf/">The Cerebral Palsy International Research Foundation (CPIRF)</a> </b></span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<h2>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #8e7cc3;">New Research (FY 2014)</span></span></span></h2>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
</span></span>
<h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #45818e;">Exploratory Research Grants – $500,000 ($50,000/year for two years)</span></span></span></h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
</span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><b><span style="color: #6fa8dc;"><b>Glen Lichtwark</b></span>,</b></span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"> University of Queensland (“<b><span style="color: #6aa84f;">The
Relationship between Muscle Quality, Functional Capacity and Functional
Performance through the Adult Lifespan in Cerebral Palsy</span></b>”) </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">Email:
g.lichtwark@uq.edu.au </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
As people with cerebral palsy age, they often experience greater
challenges in mobility due to muscle weakness, increased joint
stiffness, and reduced control of muscles. We do not know how the
natural effects of aging interact with the musculoskeletal adaptations
that occur due to CP. Is there deterioration in muscle quality in adults
with CP and does this limit the ability to perform daily activities
like walking? To answer this question we need to examine the structure
and function of muscles in CP and relate this to the ability to perform
functional tasks or participate in physical activity. This information
will enable us to recommended interventions that slow decline in
function, improve health and reduce risk of falls. </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
</span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #6fa8dc;"><b>Alexander Hoon</b></span>, </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">John Hopkins University School of
Medicine (“<span style="color: #6aa84f;"><b>Quantitative Mapping of the Basal Ganglia and Related
Structure In Children with Dyskinetic Cerebral Palsy</b></span>”) </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">Email:
hoon@kennedykrieger.org </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
Brain injury affecting the brain’s basal ganglia (BG), due to low oxygen
at birth or genetic metabolic disorders, result in movement disorders
called dyskinetic cerebral palsy. Quantitative Susceptibility Mapping
(QSM) is a new neuroimaging technique that has never been applied to the
study of brain structure and basal ganglia injury in children with
dyskinetic CP. The aim of this study which is being co-funded by the
Cerebral Palsy Alliance in Australia is to map injury to basal ganglia
(BG) and related structures in 15 children with dyskinetic cerebral
palsy (CP) and 15 unaffected children. More precise quantifications of
basal ganglia structures and their connections in children with
dyskinetic cerebral palsy will help refine targets for therapeutic
interventions such as Deep Brain Stimulation (DBS). </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
</span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #6fa8dc;"><b>An Massaro</b></span>, </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">The George Washington University School of
(“<b><span style="color: #6aa84f;">Quantifying Basal Ganglia Thalamic Injury i n Neonatal Hypoxic
Ischemic Encephalopathy – A Method for Early Assessment of CP Risk</span></b>”)</span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">Email: ANguyenM@cnmc.org </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
Hypoxic ischemic encephalopathy (HIE) refers to brain injury resulting
from reduced blood and oxygen delivery to a baby’s brain near the time
of birth. Advanced magnetic resonance imaging (MRI) is a safe,
non-invasive tool that can be used to measure tissue health and blood
flow in deep brain structures. Using brain MRI measurements in newborns
to predict later childhood disability can advance clinical care by
providing means to assess the immediate effects of treatments for brain
injury. This project aims to evaluate advanced MRI tools that can help
prevent or ameliorate disability due to cerebral palsy that is often a
consequence of HIE and other neurologic disorders in the newborn.</span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
</span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #6fa8dc;"><b>Ming Wu</b></span>,</span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"> Rehabilitation Institute of Chicago (“<b><span style="color: #6aa84f;">Robotic
Pelvis Manipulation Improves Dynamic Balance and Walking in Children
with Cerebral Palsy</span></b>”) Email: w-ming@northwestern.edu </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
Horseback riding (hippotherapy) has been shown to improve balance in
children with CP. However, this beneficial therapy is not available for a
majority of patients because of limited access to horses, weather
conditions, and the relatively high cost due to the need for multiple
professional staff during a hippotherapy session. As a result, there is
a need to develop a novel robotic system to make this type of therapy
more widely available for children with CP. We propose to test whether
providing controlled 3D movement (similar to that of a horse) astride a
cable-driven robotic system will improve dynamic balance and walking
function in children with CP. </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
</span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #6fa8dc;"><b>Bernadette Gillick</b></span>,</span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"> University of Minnesota Program in
Physical Therapy Medical School (“<b><span style="color: #6aa84f;">Application of Non-Invasive Brain
Stimulation (NBS) in Children with Hemiparesis to Improve Hand
Function</span></b>”)</span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"> Email: gillick@umn.edu </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
Weakness on one side of the body due to cerebral palsy, or hemiparesis,
affects the functional ability of an individual during childhood and
throughout the lifespan. Using a specific form of stimulation,
transcranial direct current stimulation or tDCS, brain cells that were
inactive due to injury have the potential to become instrumental in
function. tDCS is painless, cost-effective, and portable and has shown
no evidence of seizure or other serious adverse event. The proposed
research combines tDCS with constraint-induced movement therapy (CIMT)
to investigate their benefit on hand function in children with
hemiparetic cerebral palsy. </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #45818e;">Hausman Clinical Scholars Award – $225,000 ($75,000/year for three years)</span></span></span></h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
</span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #6fa8dc;"><b>Kathryn Connaghan</b></span>, </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">Northeastern University (“<b><span style="color: #93c47d;">Prosodic
Differences and Their Impact on Speech Intelligibility in Cerebral
Palsy</span></b>”) </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">Email: k.connaghan@neu.edu </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
The clinical presentation of cerebral palsy frequently includes motor
speech impairments which can substantially impair communication. Even in
its mildest forms, atypical speech can impact social interactions and
quality of life. Through a series of speaking and listening studies we
will examine the interaction of perception and production of prosody
(rhythm and pattern of sounds) and its impact on speech intelligibility
in CP. In addition to contributing to the scientific and clinical
knowledge base, findings from this work may challenge current clinical
assumptions and lead to novel, more efficacious inventions that address
the complex communication needs of individuals with CP. </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #45818e;">Cerebral Palsy Research Center of Excellence – $600,000 ($200,000/year for three years)</span></span></span></h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
“<span style="color: #6fa8dc;"><b>Prevention and/or Cure of White Matter Injury among Preterm Infants</b></span>”</span></span><br />
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The purpose of this research funding ($1 million over five years)
initiative is<b><span style="color: #93c47d;"> to support innovative research and/or infrastructural
needs leading to prevention and/or cure of cerebral palsy due to white
matter injury among preterm infants</span></b>. The proposed research aims should
address one or more novel approaches to prevention and/or cure and lead
to a human application within the project period (i.e. five years or
less). Importantly, this project should serve as the foundation of the
establishment of an integrated, interdisciplinary Cerebral Palsy Center
of Research Excellence (CPCRE), focused on prevention and/or cure of
cerebral palsy, which will endure and flourish beyond the timeframe of
this particular project.
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Proposals have been submitted and are under review by an international
panel of experts. Announcement of the winner of this competition is
expected in late Spring, 2014. </span></span><br />
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #45818e;">Deep Brain Stimulation Registry – $210,000 ($70,000 per year for three years)</span></span></span></h3>
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><b><span style="color: #93c47d;">Deep brain stimulation (DBS) is a new neurosurgical treatment involving
the implantation of a medical device called a brain pacemaker, which
sends electrical impulses to specific parts of the brain. DBS in select
brain regions has provided remarkable therapeutic benefits for otherwise
treatment-resistant movement disorders such as Parkinson disease,
tremor and dystonia.
</span></b></span></span><br />
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To date there has been minimal exploration of the utility of DBS in
cerebral palsy (CP). Before DBS becomes more widely utilized in CP, with
the risk of inappropriate use and even harm, it is imperative that it
be subjected to rigorous scientific scrutiny.
</span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
CPIRF has facilitated and funded two meetings regarding establishment of
a DBS in CP registry to which neurologists and neurosurgeons around the
world would contribute data regarding their patients with CP who
undergo DBS. Such a registry would provide invaluable guidance regarding
optimal patient candidates, best sites of electrode implantation,
complications, and outcomes. Based on the collective experience in
various medical centers globally, an informed prospective clinical trial
of DBS in CP can be implemented. The DBS in CP registry will be
operational in early 2014.
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #8e7cc3;">Continuing Research Programs of FY 2013</span></span></span></h2>
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</span></span>
<h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #45818e;">Advancing Neuroimaging and Educational Training $225k ($75k/year for three years)</span></span></span></h3>
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</span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><b><span style="color: #6fa8dc;">Christopher D. Smyser, MD</span></b></span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">, Assistant Professor of Neurology at
Washington University/St. Louis Children’s Hospital is continuing his
research as an Ethel & Jack Hausman Clinical Research Scholar Award
recipient.
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Dr. Smyser’s research award is in its second year with funding support
by the Hearst Foundation. Dr. Smyser is <b><span style="color: #93c47d;">utilizing an innovative
advanced neuroimaging approach, in an investigation of prematurely born
infants to provide insight into the earliest forms of functional brain
development and further define the effects of cerebral injury.</span></b> Award
funds are designed to specifically help Dr. Smyser improve neurological
care for infants and management of neurodevelopment disorders at St.
Louis Children’s Hospital. Funding will additionally enable Dr. Smyser
to provide medical students, resident physicians and fellow physicians
with the knowledge and clinical skills necessary to assess infants with
neurological concerns and neurodevelopmental disabilities and develop
comprehensive management plans for patient care. </span></span><br />
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<h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #45818e;">Improving Pain Treatment in Adults $400k ($200k/year for two years)</span></span></span></h3>
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A special project research grant was awarded to <b><span style="color: #6fa8dc;">Dr. David Roye and Dr.
Joseph Dutkowsky</span></b> at Cerebral Palsy Center at Columbia University Medical
Center in New York for their research platform on <span style="color: #93c47d;"><b><span style="text-decoration: underline;">Pain in the Adult with Cerebral Palsy</span>.</b></span>
The purpose of this two-year project is to address the scarcity of data
related to the experience of pain for adults with cerebral palsy, to
ultimately devise better pain treatment in these adults, providing a
transformative addition to medical knowledge and patient care. The
current published data deals mainly with prevalence and few articles
discuss treatment efficacy or etiology. Contributing is the relatively
subjective nature of pain coupled with the difficulty of assessing pain,
especially in non-communicative or cognitively impaired people with CP.
The specific aim of this research platform is to ultimately produce
tangible and influential advances in the evaluation and understanding of
pain in the entire population of adults with CP.
</span></span><br />
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<h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #45818e;">Voice and Speech Treatment in Spastic CP $100k ($50k for two years)</span></span></span></h3>
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A pilot research grant was awarded to <b><span style="color: #6fa8dc;">Carol A. Boliek</span></b>, </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">PhD, Associate
Professor, Department of Speech Pathology and Audiology Faculty of
Rehabilitation Medicine at the University of Alberta in Canada. The
study, funded in part by F.M. Kirby Foundation, focuses on <span style="color: #93c47d;"><b>the effects
of a specific speech treatment in children with CP</b></span>. The hope is that
this work will lead to National Institute of Health and Canadian
Institutes for Health Research grant applications to fund large-scale
treatment studies, the results of which have the potential to
significantly affect voice and speech treatment delivery to children
with CP. </span></span><br />
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This pilot study focuses on speech deficits in spastic CP, the most
common type of CP, which causes a high degree of muscle tightness. It
affects approximately 50% of cases. Speech deficits associated with CP
can have significant functional consequences on children, affecting
their potential for academic advancement, social and emotional
development, and eventual independence and participation in the work
force. Trial and error interventions characterize current best practice
in voice and speech treatment with this population, resulting in
frequent mismatches. This study will generate insight on how to enhance
treatment outcomes and extend the duration of treatment effects.
Ultimately the goal will be to predict which types of structural and
functional brain profiles respond best to a complex continuum of
treatment approaches. </span></span><br />
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<h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #45818e;">Brain Manipulation & Medication to Improve Motor Function $100k ($50k/year for 2 years)</span></span></span></h3>
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A pilot research grant, supported by The Hearst Foundation, was awarded
to<b><span style="color: #6fa8dc;"> Hsiu-Ling Li</span></b>, Research Assistant Professor, Department of Physiology
and Pharmacology at SUNY downstate Medical Center in Brooklyn, N.Y. <b><span style="color: #93c47d;">This
grant is vigorously testing the hypothesis of how maladaptive
plasticity (a non-typically developed brain, inflexible to change) could
exacerbate motor deficits in children with congenital hemiplegia (a
condition affecting one side of the body caused by brain damage before,
during or soon after birth)</span></b>. To date, causes remain elusive and
effective treatments are in critical need. This study will combine
optogenetics, which probes neural circuits at the high speeds needed to
understand brain information processing, and live-imaging to directly
investigate the progressive component of hemiplegic CP that occurs
during early development. A better understanding of the cellular basis
of this maladaptive plasticity will help the design of new therapies
involving manipulation of specific cortical area activity. The study
will also aid in identifying new medications to correct mal-development
after early brain injury.
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<h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #45818e;">Using a Mouse Model to Understand Brain Reorganization$100k ($50k/year for two years)</span></span></span></h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
More than half of cerebral palsy patients have brains showing some
disorganization of the cortex as do many related conditions, including
intellectual disability and epilepsy. Research fellow<b> <span style="color: #6fa8dc;">Sung-Jin Jeong</span></b> at
Children’s Hospital in the Boston Department of Medicine is the
recipient of a research grant <b><span style="color: #93c47d;">to enrich the understanding of the
pathogenesis (disease development process) of cerebral palsy and other
neurological disorders resulting from disrupted neural migration by
studying brain specimens in mice</span></b>. The hope is that better understanding
will lead to effective treatments.</span></span><br />
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<h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #45818e;">Robots Assisting in Movement $100k ($50k/year for two years)</span></span></span></h3>
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</span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><b><span style="color: #6fa8dc;">Dr. Adam Kirton</span></b>, Associate Professor, Pediatrica & Clinical
Neuroscience at Calgary Pediatric Stroke Program, Alberta Children’s
Hospital in Canada<b><span style="color: #93c47d;"> is conducting a study using children between the ages
of 6 – 18 and robots to provide a unique opportunity to better
understand sensory dysfunction in the developing brains of children with
CP. Proprioception – the sensation of position, motion, and force </span></b>– is
essential for limb function but remains unquantifiable in perinatal
stroke and CP. Improved therapeutic strategies could benefit tens of
thousands of children globally with hemiplegic CP (a condition affecting
one side of the body). </span></span><br />
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<h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="color: #45818e;">The Role of Genetics $100k ($50k/year for two years)</span></span></span></h3>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">
Neuropsychologist<b><span style="color: #6fa8dc;"> John Connolly</span></b> of the Center for Applied Genomics at
the Children’s Hospital of Philadelphia was awarded a grant with funding
support by The Hearst Foundation,<b><span style="color: #93c47d;"> to outline a powerful methodology
aimed at delivering important insights into the genetic causes of CP</span></b>. He
predicts that genetic defects collectively constitute a substantial
proportion of all CP cases and that recent developments in genomic
technology now offer an unprecedented opportunity to acquire a
sophisticated understanding of the genetic causes of CP, and ultimately,
reduce its impact and prevalence.</span></span>The Cerebral Palsy Networkhttp://www.blogger.com/profile/10240710513642269150noreply@blogger.com1tag:blogger.com,1999:blog-2804979302706994744.post-51500386788175706742014-04-18T10:16:00.001-07:002014-04-24T08:50:39.845-07:00We haven't used our blog in awhile but with the new updates at the website it is something that we will be making a serious effort to do so that we can share the interesting items we find regarding CP and special needs right away vs a website update.
I hope that this will be something people enjoy.
Your thoughts of what you'd like to hear about or for us to help you in researching please post here!
Enjoy everyone.
The Cerebral Palsy NetworkThe Cerebral Palsy Networkhttp://www.blogger.com/profile/10240710513642269150noreply@blogger.com2tag:blogger.com,1999:blog-2804979302706994744.post-55614120319254050572008-05-29T02:52:00.000-07:002014-04-24T08:51:14.313-07:00Taking time out for youWhen we are dealing with a disability as parents some times we, without realizing it allow the needs of our child to encompass us, forgetting to take time out for ourselves.<br />
Taking time out for ourselves does not just mean getting out and away from home such as going out for dinner or a walk in the park with our partners. Taking time for ourself can also mean spending time out in our yard relaxing pulling weeds or taking a long bath while someone else cares for our child.<br />
This can be extremely hard to do because as with any parent it is hard to let go, step back and entrust someone else to care for our children.<br />
We've written several articles in our <a href="http://thecpnetwork.org/caregiversburnout.html">disability library </a>that can offer great resources and tips for parents and loved ones caring for clients or loved ones. Having care givers burnout leaves you with life long effects even after you identify and deal with it. The best prevention is caring for yourself as well as your child.<br />
Caregivers burnout not only effects you but it affects your child, your other children and marriage as well.<br />
I encourage anyone taking care of someone with a medical need to review this information in our disability library.The Cerebral Palsy Networkhttp://www.blogger.com/profile/10240710513642269150noreply@blogger.com0tag:blogger.com,1999:blog-2804979302706994744.post-18965304156007339822008-05-25T11:16:00.000-07:002014-04-24T08:48:22.423-07:00Beyond Cerebral PalsyAs parents and individuals whom are daily involved in the disability world life is "normal" for us. We don't see tragedy and grief. Nor do we sit back and think about can we do this. We just do it never looking back or thinking twice. It's been proven time and again that this is truly human nature. When faced with situations that one may normally never imagine being able to do. But usually you just do what ever it takes to make things happen.<br />
Yes life can get you down no matter what the situation and many days we may actually wonder can we do this. Sometimes, we even realize that we could use an out. It's not an "out" from our children or an "out" from ourselves. It is however a moment to regroup, recharge and revitalize and to step back from the situation at hand as anyone would in any normal every day situation. To have a moment of no stares or comments or you poor thing.. Please understand that we aren't a poor thing we are truly and whole heartedly are Blessed. God has given us a wonderful opportunity to touch a life and to make a difference.<br />
As a parent of a child whom has a medical condition called Bilateral Schizencephaly and Cerebral Palsy, I have to tell you there has been one wish for me when it has come to my daughter that has prevailed over time. And that was that was for my daughters voice. Her family understands her as do people whom have taken the time to know her. But as time goes by it gets harder and harder for her to speak and she has so much to say that people can't or won't take the time to listen to. IF they did they would be blessed to realize she is funny and smart and a pure joy and a blessing of wisdom. I did hope for her to walk I did hope for her to crawl to run jump and play. We all do, but then we have the joy of seeing a miracle of Faith when our child smiles or laughs or blesses us by just simply being. Then the walking and talking seem so small. The bible talks about faith the size of a mustard seed and for me, my life daily is just that..<br />
Of course I couldn't imagine enduring watching my child suffer from brain cancer and my heart is ripped to sunders when I read or hear of something of that sort, I start to tell myself I don't think I could do it and then this little voice reminds me.... "Yes you could and you'd do whatever it takes to make your Childs life the best it could be." Just like when I found out my daughter had Cerebral Palsy. I didn't cry, I also didn't say why me why my child. I may have been the rarity in that case but all I wanted to know was ok what do I do for her to make her life the best it could be. I don't regret that to this day and I'm thankful for me it was how my grieving progressed because from that moment I grew and learned from my child. What a rare and wonderful miracle<br />
The next time you see an individual with CP or a mother toting a child on her hip and pushing another in a wheelchair don't run down the next isle to get away. IF your curiosity gets you, go with it, ask . It's ok to put yourself in the position of needing to know and to understand. It is the only way to learn by being taught or experiencing it. Just because you don't know quite what to say don't say Im sorry and don't think of a disability as a death sentence because it's not. And please please give our children a chance to express their knowledge to you before presuming they don't comprehend. You will miss the blessing before you if you do..<br />
Thinking beyond CP doesn't just start with parents or individuals it also starts with you.<br />
It is my hope that with this section of our CP awareness area that we can offer a place for parents and individuals a place to express their views on "beyond CP". Just what they want others to know and realize about their situations as well as a place for those whom do not deal with disabilities to have a place they too can ask those questions.<br />
Feel free to add your thoughts on what "beyond CP" means to you or things you hope to express to the world (yes in a kind way please) what you hope for them to see beyond CP.<br />
If you have a question on how you wander something should be handled or have a question your afraid to ask someone face to face. Please feel free to ask. This Blog is open to the public and is a first in our organization to have. We've usually kept our blogs and such closed to the public. Please respect one another here. We are in the business of helping others not tearing people down. Thanks mucho More coming soon.The Cerebral Palsy Networkhttp://www.blogger.com/profile/10240710513642269150noreply@blogger.com3