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Research for Speech Disorders /
Apraxia
Look
Who's Talking Now: Speech Disorders and the Therapeutic Role of
Essential Fatty Acids
Scientists
Help Children With Communication Disorders
First language gene identified
Oct. 3, 2001 — British scientists say
they've discovered the first gene tied to a language and speech disorder,
raising hopes that the genetics revolution is closer to identifying the
biological roots of conscious thought and, perhaps, refining what it means
to be human. CALLED FOXP2, the gene produces a protein that turns other
genes on and off. Scientists believe it could hold the key to why people
suffer from speech problems. It is not specifically a gene that enables us
to talk. Instead, researchers say they discovered a mutated form of the
gene, which is responsible for a protein that enables the brain's language
circuitry to function.
MSNBC NEWS SERVICES
Official Statement from The Scientific
Conference, the first for verbal apraxia, which will lead to clinical
research for apraxic children
How did this Apraxia /EFA Scientific Conference Come About?
Scientific
Organizers
Scientific
Panelists
Administrative
Organizers
Conference
Information/Agenda
EFA
Resources
Official Statement from The First
Scientific Conference Dedicated to the Therapy of Verbal Apraxia/Dyspraxia!
You may want to explore the
archives of our grouplist.
The
First Scientific Conference on Therapy for Verbal
Apraxia/Dyspraxia
The First Scientific Conference on Therapy for
Verbal Apraxia/Dyspraxia, held on July 23-24, 2001 at the
Headquarters Plaza Hotel, Morristown, New Jersey under the
auspices of the CHERAB Foundation (http://www.apraxia.cc),
focused on "Essential Fatty Acids (EFAs) and Verbal
Apraxia: A New Potential Therapeutic Intervention."
A panel of scientific experts discussed the evidence
presented at the conference in the form of professional
anecdotal case reports on improvement of verbal communication
ability with EFA supplementation in this population. The
panel unanimously agreed that the existing scientific evidence
justifies planning and implementing a comprehensive clinical
trial to convincingly validate this new potential therapeutic
intervention.
The panel discussed various clinical research
alternatives including the following:
A controlled case series trial using currently available
standardized speech assessment measures or developing new
clinical assessment profiles for baseline and post-EFA testing
A randomized, placebo-controlled multicenter clinical trial of
EFA and placebo supplementation to be undertaken as soon as
possible. For example, if a randomized, placebo-controlled
clinical trial would be undertaken, all diagnosed verbal apraxic
children, including those with hypotonia and sensory integration
disorder, who have not been supplemented with EFAs, would be
eligible for randomization. The panel suggested that all
randomized children would be supplemented with EFA or
placebo in addition to appropriate speech therapy. This
took into consideration the potential cooperative or possibly
synergistic effect of the combined therapies in the treatment
group. The length of the trial is proposed to be 3 months.
Improvement in verbal communication skills, or the lack thereof
using an assessment protocol as described above, would be the
major therapeutic outcome measured, and plasma, as well as
erythrocyte membrane EFA levels would be monitored periodically.
The two groups would consist of about 20-30 age-matched
subjects. ProEFA would be the therapeutic supplement used in the
trial based on preliminary successes attained.
In addition the panel noted the potential
availability of electrophysiological measuring instruments that
could serve as assessment tools of developmental-behavioral
characteristics of a verbal apraxic child, and recommended the
exploration of such techniques. While the panel refrained
from discussing the etiology and pathophysiology of verbal
apraxia, it also expressed great interest in what appears to be
a presence of verbal apraxia in a percentage of children on the
autistic spectrum and a possible association in other
disorders and syndromes, such as: hypotonia, sensory integration
disorder, dysarthria, attention deficit hyperactivity disorder,
Kabuki Syndrome and cerebral palsy. The panel recommended
further exploration of these phenomena.
Although no final decision was reached on the
nature of the clinical trial/trials to be undertaken, the
workshop ended with a commitment from all members to continue
debating this issue in close collaboration with the organizers,
and to reach a decision within the shortest timeframe possible.
The organizers thank all panel members for their
tireless dedication and enthusiastic participation in the
Workshop's deliberations, and thank all parents who contributed
to the success of the workshop, by requesting the professionals
supervising and treating their children to complete a
professional anecdotal case report questionnaire on the outcomes
of EFA supplementation. This workshop could not have taken
place without their assistance.
The organizers also wish to acknowledge with
thanks the assistance of many dedicated parents in helping with
the logistic aspects of the workshop.
Last but not least, the organizers are thankful
to the CHERAB Foundation's president, Ms. Lisa Geng, for her
support of this workshop, and her boundless energy and
enthusiasm in the service of verbal apraxic children and their
parents.
The Scientific
Organizers:
Marilyn
Agin, M.D., and Robert Katz, Ph.D.,
Marilyn
Agin, M.D.
Medical Director, Early Intervention, New York City, NY
Susan
E. Carlson, Ph.D.
Professor, University of Kansas, Kansas City, Kansas
Member Consortium for Fatty Acids (CFBFA)
Joseph
Hibbeln, M.D.
Chief, Outpatient Clinic
National Institute of Alcoholism and Alcohol Abuse
NIH, Bethesda, Maryland
Robert
Katz, Ph.D.
Managing Director, Consortium for Brain Fatty Acids (CFBFA)
Omega-3 Research Institute, Inc.
Nancy
Kaufman, M.A., CCC/SLP
Director, Kaufman Children's Center for
Speech Language and Sensory Disorders,
West Bloomfield, Michigan
Ann
Moser
Director, Peroxisomal Diseases
and Fatty Acid Profiles Clinical Laboratory,
Kennedy Krieger Institute, Baltimore, Maryland
Member CFBFA.
Jennifer
Hill-Karrer, Ph.D.
Associate Professor,
University of Kansas Medical Centre, Kansas City, Kansas
Lori
Roth M.A., CCC/SLP
Speech Pathologist, CHERAB Foundation
Andrew
Zimmerman, M.D.
Professor, Johns Hopkins University and
Kennedy Krieger Institute, Baltimore, Maryland
Guest Panelist:
Alexandra
J. Richardson, MA, DPhil
Senior Research Fellow in Neuroscience, Imperial College School of
Medicine, MRI Unit, Hammersmith Hospital, London; and University
Lab. of Physiology, Oxford.
Hugo
W. Moser, M.D.
University Professor, Johns Hopkins University School of
Medicine Baltimore, MD Director of Neurogenics Department,
Kennedy Krieger Research Institute Baltimore, MD
The Administrative
Organizers:
CHERAB
Foundation
Lisa
Geng, President, Suzanne Smolyar, Executive Vice
President, and Glenn W. Geng Executive Director, Treasurer
For
scientific details on the Conference please contact Dr. Robert Katz,
President, Omega-3 Research Institute, Inc at the following e-mail
address: omega3ri@aol.com
For all other information, please contact the CHERAB Foundation
The Infancy Studies Laboratory The Center for Molecular & Behavioral Neuroscience Of Rutgers University In Newark
Cynthia Rosler M.A. CCC-SLP, a research SLP presented the fascinating
work that the Infancy Studies Laboratory of Rutgers University in Newark
is involved in at one of our nonprofit's meetings
last year.
They are a research facility that studies language and cognitive
development from infancy to adulthood that has been featured numerous
times on ABC, NBC, CNN, BBC, PBS, written up in Time Magazine, NY Times,
and so much more. Their on-going work includes a
longitudinal investigation of language outcome in both control subjects
and children at risk for language difficulties (i.e., those with a family
history of problems). This site includes some background on our work as
well as opportunities for getting involved in this important research.
Rutger's Baby Lab
First language gene identified
Oct. 3 — British scientists say they've
discovered the first gene tied to a language and speech disorder, raising
hopes that the genetics revolution is closer to identifying the biological
roots of conscious thought and, perhaps, refining what it means to be
human. CALLED FOXP2, the gene produces a protein that turns other genes on
and off. Scientists believe it could hold the key to why people suffer
from speech problems. It is not specifically a gene that enables us to
talk. Instead, researchers say they discovered a mutated form of the gene,
which is responsible for a protein that enables the brain's language
circuitry to function.
MSNBC NEWS SERVICES
Apraxia Survey For Families
More research about Apraxia! Is it possible?!
Apraxia Survey
Research Project By Dr. David Givens
Dr. Givens is from the Center For Nonverbal
Studies, home of the nonverbal
dictionary.
Apraxia
Research Project By Dr. Thomas Campbell
"In stark contrast, the
children with apraxia of speech whose parent stated that three quarters of
their child's speech could be understood following treatment, required 151
individual sessions (ranging from 144-168). In other words, the children
with apraxia of speech required 81% more individual treatment sessions
than the children with severe phonological disorders in order to achieve a
similar function outcome." Functional treatment outcomes for young
children with motor-speech disorders by Thomas Campbell in Clinical
Management of Motor Speech Disorders A.J. Caruso and E.A. Strand 1999.
Copy of email from Children's
Apraxia Network's Pediatric OT
Moira Kowalczyk about apraxia research
"I will refer you to a
fantastic book entitled "Developmental Motor Speech
Disorders" written by Michael Crary. it is available
through Therapy Skill Builders Catalog which is a subsidiary of
Psychological Corporation. I'm sure you can find them on the web
some how. if not, contact me directly and I can give you more specifics.
I have been an OT for 15 years and I can tell you that the concept of
Apraxia was well known when I was just beginning. In
fact, it has always been a particular interest of mine. when I
worked in NY I remember having a GIGANTIC file on the subject!!
In the Crary book there are tons of references and many chapters are
devoted to explaining and sifting through the conflicting research related
to diagnosis and treatment of verbal apraxia. Crary has a rather
unique look a apraxia that I have not seen written in exactly the way that
he does in any other book so far. He proposes a model that
represents an attempt to accommodate relationships between oral motor and
motor speech deficits and clinical variations within each function.
One of the position statements that lay the foundation for this way of
thinking is that there are:
#1"overlapping motor and speech-language functions that exist within
the left-hemisphere "language areas", meaning that although
motor and speech dysfunctions may occur independently, there are cases in
which dysfunctions in BOTH areas may occur.
#2.Along the "anterior-posterior dimension" (referring to
anatomical locations in the brain) within the left hemisphere there are various
steps or levels in information processing that pertain to both motor a
speech-language functions.
Therefore, Crary feels that deficits in the more frontal areas,
(anterior) would result in more motoric/"executive" (motor
execution) deficits of speech and oral movement where as the posterior
(temporal-parietal areas of the brain) are responsible for the more linguistic
and/or "planning" aspects. therefore the "purest
executive (anterior/frontal) deficit would be DYSARTHRIA secondary
to abnormal function within the primary motor system. this disorder
is felt to be at the extreme motor execution end of the continuum.
Deficits in the far posterior end of the continuum would not be expected
to show significant pure motor speech impairments but rather
sequencing deficits might be seen on various "motor/language"
tasks related to deficits in selection and serial ordering. Such
communicative impairments might be classified as "specific
language impairments". moving forward on the continuum would enter
those areas where non-dysarthric motor speech disorders, specifically
apraxias of speech, might be expected. these disorders are proposed
to be the result of when motor AND language functions overlap. Motor
speech disorders at the 'posterior' end of the continuum would be expected
to reflect impaired planning in BOTH MOTOR and SPEECH-LANGUAGE functions.
(that is why we frequently see disordered language in these guys with
apraxia even though it is thought of as a "motor speech disorder'.
doesn't that make sense guys?!!)
Anyway, this is a great book for hard core data and lots and lots of research
studies and their interpretation and relevance as seen by CRARY. I
love this book, but it is quite the DRY, (and I mean DRY!!!)
read. However, one will without fail, end up with a MUCH greater and
in-depth understanding of the many fascinating aspects of DEVELOPMENTAL
MOTOR SPEECH DISORDERS.
I hope this little excerpt of
info from Crary'sbook entices all who have read this post to go out and
get his book. it is by far the most extensive and exhaustive piece
of literature that I have read on the subject of motor speech
disorders to date!!!! Russell Love's recent re-publication of
"Childhood motor Speech Disorders' although good, is like
Fluffernutter to Crary'sbook. th-th-th-that's all folks!!!!
Good luck on your research. please contact me if I can be of any
assistance!!!!"
Talking Page
OK, so this is not an
"official" research site, but it's the only one like it where
you can hear various children with apraxia on the web! Apraxia ranges from mild to severe. That's why it's great to be able
to listen to various children (young adults too) with apraxia talk, to compare to your own
child. Great website for watching the 2 year progress of Brandon who was
first diagnosed with apraxia at 5 (After a hospital evaluation diagnosed
him with a "moderate delay of speech" at 3 when he only had 4 or
5 words!)
Talking Page
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