Discovered 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.

The link is: http://www.abrcanada.com

It is called The ABR Method, which is short for which is short for Advanced Biomechanical Rehabilitation.
Here is a short copy from their site.
which is short for Advanced Biomechanical Rehabilitation

A soft, non-invasive and efficient method

ABR addresses…

1) The volumetric structure of the Hydraulic Visceral Core…

…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.
…the principle consists of delivering Biotensegral Compressional loading (compression without distortion) to the body in order to induce BioTensegral Counter Response (uniform diverging response).
The techniques being used are…

The Manual Technique, known as the 3Qs Technique

• Quasi-static movement (super slow movement delivering maximum input)
• Quasi-spherical application (minimal area of contact, sufficient for getting a volumetric response)
• Quasi-isotropic movement  (no deformation of the surface leading to loss of efficiency)

The ABR Machine

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.
Ideal to use during the night, it conveniently maximizes the number of potential working hours.
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.

2) The fascial layers of the musculoskeletal system

… focusing on the sequential arrangement of the layers and reaching the internal weaker ones .
The techniques being used are…

The Super Soft Ball Rolling Technique

Targeting fascial layers response of denser and tubular areas (thorax, vertebral column, pelvis, etc)

The Trans-Fascial Viscoelastic Stimulation Technique

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.






Thoughts? Opinions? Experiences?

 credit for this information goes to: My Child @ Cerebral Palsy .Org

Research on Cerebral Palsy

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.

Research is also performed on treatment and therapy options. For instance, stem cell research 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.
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.
To learn more about stem cell research, in particular, call the MyChild™ Call Center at . The MyChild™ call center has material on the following stem cell topics:

• Basic information about the promise of stem cell research
• Ethical issues surrounding stem cell research
• Stem cell research programs and clinical trials at universities and institutions
• International stem cell research progress
• White House guidelines on stem cell research
• Understanding cord blood options
• Understanding blood and marrow transplantation
• Medical position statements on cord blood usage
• Medical position statements on stem cell treatment
• Types of stem cells (adult stem cells, tissue-specific, fetal, cord blood, embryonic and induced pluripotent stem cells)
• International progress in promoting stem cell research and the advancement of biomedical science

To learn more about various other research studies and clinical trials that can improve the lives of those with Cerebral Palsy, MyChild™ has compiled the following list of international and national research entities currently conducting studies to benefit those with cerebral palsy. MyChild™ 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.

INTERNATIONAL AGENCIES

International agencies based outside of the United States promoting cerebral palsy research, include:
United Nations (UN) 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.

World Health Organization (WHO) 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.
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.

GOVERNMENT ORGANIZATIONS

The U.S. Department of Health and Human Resources (HHR)

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:

Centers for Disease Control and Prevention (CDC)

The Centers for Disease Control and Prevention (CDC) 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:
Metropolitan Atlanta Development Disabilities Surveillance Program (MADDSP) monitors five developmental disabilities, including cerebral palsy, in Atlanta. It is the model for many other programs in US.
Autism and Developmental Disabilities Monitoring Network (ADDM) tracks children with autism spectrum disorders and cerebral palsy.
Centers of Excellence for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) also study autism and cerebral palsy in children.

Other Important HHR Research Divisions

National Institute of Neurological Disorders (NINDS) is currently researching traumatic events, genetic defects and treatment protocols in cerebral palsy.
National Institute of Health (NIH), known as one of the world’s largest research centers, NIH has the largest source of funding for medical research worldwide.
Center on Birth Defects and Developmental Disabilities (NCBDDD) 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.
The Health Resources and Services Administration (HRSA) is a U.S. agency dedicated to improving access to health care services for people who are uninsured, isolated, or medically vulnerable.
Maternal and Child Health Bureau (MCHB) 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.

Lastest Cerebral Palsy Research

The Cerebral Palsy Network

Here is the latest Research from the The Cerebral Palsy International Research Foundation (CPIRF) 

New Research (FY 2014)

Exploratory Research Grants – $500,000 ($50,000/year for two years)

Glen Lichtwark,

 University of Queensland (“The Relationship between Muscle Quality, Functional Capacity and Functional Performance through the Adult Lifespan in Cerebral Palsy”) 
Email: g.lichtwark@uq.edu.au 

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. 

Alexander Hoon, 

John Hopkins University School of Medicine (“Quantitative Mapping of the Basal Ganglia and Related Structure In Children with Dyskinetic Cerebral Palsy”) 
Email: hoon@kennedykrieger.org 

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). 


An Massaro, 

The George Washington University School of (“Quantifying Basal Ganglia Thalamic Injury i n Neonatal Hypoxic Ischemic Encephalopathy – A Method for Early Assessment of CP Risk”)
Email: ANguyenM@cnmc.org 

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.

Ming Wu,

 Rehabilitation Institute of Chicago (“Robotic Pelvis Manipulation Improves Dynamic Balance and Walking in Children with Cerebral Palsy”) Email: w-ming@northwestern.edu 

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. 

Bernadette Gillick,

 University of Minnesota Program in Physical Therapy Medical School (“Application of Non-Invasive Brain Stimulation (NBS) in Children with Hemiparesis to Improve Hand Function”)
 Email: gillick@umn.edu 

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. 

Hausman Clinical Scholars Award – $225,000 ($75,000/year for three years)

Kathryn Connaghan, 
Northeastern University (“Prosodic Differences and Their Impact on Speech Intelligibility in Cerebral Palsy”) 
Email: k.connaghan@neu.edu 

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. 

Cerebral Palsy Research Center of Excellence – $600,000 ($200,000/year for three years)

“Prevention and/or Cure of White Matter Injury among Preterm Infants”

The purpose of this research funding ($1 million over five years) initiative is 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. 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.
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. 

Deep Brain Stimulation Registry – $210,000 ($70,000 per year for three years)

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.
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.
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.

Continuing Research Programs of FY 2013

Advancing Neuroimaging and Educational Training $225k ($75k/year for three years)

Christopher D. Smyser, MD
, 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.
Dr. Smyser’s research award is in its second year with funding support by the Hearst Foundation. Dr. Smyser is 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. 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. 

Improving Pain Treatment in Adults $400k ($200k/year for two years)

A special project research grant was awarded to Dr. David Roye and Dr. Joseph Dutkowsky at Cerebral Palsy Center at Columbia University Medical Center in New York for their research platform on Pain in the Adult with Cerebral Palsy. 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.

Voice and Speech Treatment in Spastic CP $100k ($50k for two years)

A pilot research grant was awarded to Carol A. Boliek, 
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 the effects of a specific speech treatment in children with CP. 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. 

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. 

Brain Manipulation & Medication to Improve Motor Function $100k ($50k/year for 2 years)

A pilot research grant, supported by The Hearst Foundation, was awarded to Hsiu-Ling Li, Research Assistant Professor, Department of Physiology and Pharmacology at SUNY downstate Medical Center in Brooklyn, N.Y. 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). 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.

Using a Mouse Model to Understand Brain Reorganization$100k ($50k/year for two years)

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 Sung-Jin Jeong at Children’s Hospital in the Boston Department of Medicine is the recipient of a research grant 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. The hope is that better understanding will lead to effective treatments.

Robots Assisting in Movement $100k ($50k/year for two years)

Dr. Adam Kirton, Associate Professor, Pediatrica & Clinical Neuroscience at Calgary Pediatric Stroke Program, Alberta Children’s Hospital in Canada 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 – 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). 

The Role of Genetics $100k ($50k/year for two years)

Neuropsychologist John Connolly of the Center for Applied Genomics at the Children’s Hospital of Philadelphia was awarded a grant with funding support by The Hearst Foundation, to outline a powerful methodology aimed at delivering important insights into the genetic causes of CP. 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.

We 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 Network

Taking time out for you

When 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.
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.
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.
We've written several articles in our disability library 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.
Caregivers burnout not only effects you but it affects your child, your other children and marriage as well.
I encourage anyone taking care of someone with a medical need to review this information in our disability library.

Beyond Cerebral Palsy

As 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.
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.
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..
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
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..
Thinking beyond CP doesn't just start with parents or individuals it also starts with you.
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.
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.
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.