Upcoming Events

Inside Edition TV

Ask The Doctors

CHERAB Home

Join Our Group

Press Room 

Index

Apraxia what's that?

Scientific Programs 

Success Stories

 

CN8 Half and Hour Talk Show "Not Just A Late Talker" (being rerun Friday, January 25, and if you are not in New Jersey, Pennsylvania, Maryland, or Delaware, you can watch this show online!!  See below!)

"Look Who's Talking Now" An article from EngleMed Health and Medicine News Service

"Jersey’s Helping Hands - An advocate for a little-known disorder"
By Michelle Howe, Star-Ledger Staff

Under the Umbrella Fall/Winter 1999, Children's Specialized Hospital "Unlocking the Words: Helping children with apraxia"

From The LCP Solution by B. Jacqueline Stordy "DYSPRAXIA/APRAXIA: THE "LELLOW" BREAKTHROUGH"

Scientific Programs 

TV show on Late Talker vs Apraxia 

"Not Just A Late Talker" TV Show

We crashed the server...again!!

"Not Just A Late Talker" A half and hour talk show about verbal apraxia featuring parents and professionals from CHERAB aired twice now on CN8 on the show, "Real Life" 

We know that only the people that receive the CN8 TV station were able to watch the Not Just A Late Talker show on TV even though CN8 has now aired it twice.  I spoke to the producer about what happened and as you all probably know, in the media world crashing the server for a second time is not a bad thing. It sends a powerful message to them and the world that there is extremely strong interest in this area, and that there are more than us than they thought.
 
Before CHERAB, most people looked at apraxia as an unknown, and possibly rare speech disorder. That may be because most just stuck to the label "apraxia" which is limiting since that label is controversial, yet the reality is that children with the same "late talker" symptoms are on the rise. So no matter what you or your doctor or your school or your speech therapist or your mother in law calls this speech disorder/impairment, there are more "late talkers" today than there were years ago. And there is something that needs to be done about it to help all of our children, and all of us.
 

 

"Not Just A Late Talker" A half and hour talk show about verbal apraxia featured parents and professionals from CHERAB on the CN8 show "Real Life" on 1/14 2001 and 1/25/2002  You can view this online at http://www.cn8.tv (you will need Real Player to view it). You can get a free trial of Real Player (to find the "free" download of Real Player look for the small type on the gray bar on this page)  test it out.

 This show, titled "Not Just a Late Talker" (You know how everyone says "Oh he's just a late talker!") is about apraxia from the viewpoint of parents and professionals.  Appearing on the show are: one of the advisors for CHERAB, Dr. Judy Flax , PhD in charge of research for the Center for Molecular and Behavioral Neuroscience at Rutgers University, as well as Cheryl Bennett Johnson SLS MA /Educational Consultant who is featured in two commercials as the NJ Teacher Representative.  
  
The 6:00 PM half- hour talk show on Late Talker vs. Apraxia aired all over New Jersey,  Maryland, Pennsylvania and Delaware to over 4 million homes.  
 
If you want a video copy of the half and hour talk show on Late Talker vs. Apraxia, or you want to know about future re runs - call CN8 at 732-602-7492 ext. 2570  You will need to ask for show number 66 - The show is called "Real Life" titled "Not just a late talker" and the original air date is January 14th, 2002. 
 
I had heard that this show "zips by" from the producer who watched it before it aired and she was right.  She told me that when you have a great show - the time moves quickly-and our show "zipped".  (When a show goes slow -it's not a good show-but I guess that's obvious)  Glad to hear it zipped by because that's how it felt to us during the taping!  Thanks Lisa, Mary, Autumn and everyone from CN8 for helping to give the children a smile and a voice!

Since they didn't get time to really talk much on TV -listen to some of the children from the show  (click on their picture)

If you want to see some photos of Halley, Tanner and Dakota's trip to NY after the taping click here.

 

Look Who’s Talking Now: Fish oil capsules help children with speech disorders find their voices  EngleMed

A simple fish oil supplement may be the key to dramatically unlock the voices of children with speech and language disorders.

That’s the conclusion of a group of scientists who reviewed a study of nineteen youngsters suffering from various speech problems. The children, ranging in age from two years to eight years, were given a fish oil supplement containing a mixture of omega-3 and omega-6 essential fatty acids (EFAs). Speech-language pathologists who monitored the children reported significant improvements within just a few weeks. The improvements were noted not only in the children’s ability to talk, but also in their behavior, ability to focus, and in maintaining eye contact.

Now the scientists, brought together by the CHERAB Foundation, a major nonprofit group for children with speech disorders, are calling for a large-scale clinical trial to validate these initial findings.

“The results were dramatic,” says developmental pediatrician Marilyn C. Agin, M.D., medical director of the New Jersey-based foundation, who also reported similar results in ten anecdotal cases. “They strongly suggest that EFA supplementation combined with speech and occupational therapy could become the treatment of choice in multifaceted communication disorders.” 

Until now children with severe speech disorders such as apraxia, a neurologically-based condition, have required years of intensive one-on-one therapy—often with painfully slow progress. “But now, with EFA supplementation, the future for these children may be much brighter—and sooner rather than later,” says Lori L. Roth, M.S., CCC/SLP, a speech pathologist with the CHERAB foundation.

The amazing potential of EFA supplementation came to light when the nonprofit group’s president, Lisa Geng, used it with her three-year-old son, Tanner. After just three weeks his vocabulary exploded. “It was the breakthrough we had been praying for. It was incredible,” says Lisa.

Why does this supplementation work? The experts believe that the speech disorders are the result of a breakdown in communication between the brain and the muscles in the mouth, tongue and jaw that have to work together to produce speech. Essential fatty acids, especially the omega-3 DHA and the omega-6 fatty ARA, are highly necessary for brain development. Most children obtain them—during the most critical times of brain development—directly from their mothers while they are still in the womb and subsequently while being breast-fed. Any deficiency can result in permanent neurodevelopmental deficits in the growing infant.

“Therefore, essential fatty acid supplementation in neurodevelopmental speech disorders could correct a specific deficit in the speech center of the central nervous system,” says Robert Katz, Ph.D., CHERAB’s director of EFA research.

The panel of experts who reviewed the study included scientists from the NIH, Johns Hopkins University, Kennedy Krieger Institute, University of Kansas, and Oxford University, England. They join a growing group of researchers who are heralding the benefits of essential fatty acid supplementation for a wide range of brain-related problems including depression, bipolar disorder, schizophrenia, attention deficit hyperactivity disorder, dyslexia, and even Alzheimer’s disease and autism.

  For more information contact:

______________________________________________________

CHERAB FOUNDATION

COMMUNICATION HELP, EDUCATION, RESEARCH, APRAXIA BASE

help@cherab.org

Web site http://www.cherab.org  

______________________________________________________ 

Jersey’s Helping Hands

An advocate for a little-known disorder
By Michelle Howe
Star-Ledger Staff

 

At Tanner Geng’s second birthday party, his parents, Lisa and Glenn, noticed there was something wrong with their son.

“He wasn’t able to blow out the candles on his birthday cake and he couldn’t purse his lips to blow. It was a real wake-up call for us,” Lisa Geng said.

In addition, Tanner had a speech problem. At first, doctors thought he was “just a late talker,” his mother said. But his difficulties were more serious.

Tanner, now 4, was diagnosed with apraxia, a neurologically based, severe speech disorder. Apraxic children require daily, intensive therapy.”

“I’ve been told he will be able to talk- maybe not like you and I, but with continued therapy, he’ll be able to make himself understood,” Geng said.

Following the diagnosis, Geng sought a support group. But at the time there were only seven such groups in the world, and none of them was in New Jersey.

“Lauren Zimet, my son’s former therapist at Children’s Specialized Hospital suggested I start my own, so I did,” said Geng, a Warren Township resident.

Geng and two other mothers ... – founded the Children’s Apraxia Network. The group meets on the first Monday of every month at 7:00 p.m. (except for holidays) at Children’s Specialized Hospital, 150 New Providence Road in Mountainside. The organization is not affiliated with the hospital, Geng noted.

“Parents and professionals who want to help us are coming from throughout New Jersey, New York, Pennsylvania and Connecticut. In addition to being able to share information amongst ourselves, we have guest speakers from the medical community who provide us with the latest information,” Geng said.

Lori Roth, a speech pathologist with a private practice in Cedar Knolls, said the cause of apraxia is unknown.

“Children’s verbal apraxia is a motor sequency problem where there is a lack of connection in the motor section of the brain that inhibits speech. There is a wide range of severity in those with the disorder,” Roth said.

“With apraxia, a child has difficulty coordinating the oral-motor movements necessary to produce and combine speech sounds to form syllables, words, phrases or sentences,” said Michelle Ortega, a therapist who has worked with Tanner for the past six months.

“Looking back there were signs that he had problems,” Lisa Geng said, “But compared to our oldest son who had severe respiratory and developmental problems due to a traumatic birth, Tanner seemed so advanced.”

At 11 months of age, Tanner developed two cases of roseola with very high fevers, “Before the fevers, he could say “da” for dad. He couldn’t afterwards. Tanner could still say “ma” but would only say “mmm” for everything else,” his mother said.

Tanner now attends (an out of district preschool) and receives occupational therapy at the Handicapped Treatment Center in Somerset.

In addition to the professional therapy, the Gengs work with him at home as much as they can.

“Tanner is 4 now and his brother is almost 6. It’s important for us to be able to spend as much time helping them as possible, so we run an Internet shopping service (http://www.shopinservice.com) out of our home,” Geng said.

“The bottom line is, you have to become an advocate for your child, especially if he or she has a medical problem that needs extra attention.”

Under the Umbrella Fall/Winter 1999 Children's Specialized Hospital

"Unlocking the Words: Helping children with apraxia"

At two years of age, Tanner Geng of Warren was unable to blow out the candles on his birthday cake.  "He couldn't purse his lips to blow.  His face was very round and he was not expressive." said his mother Lisa.

For Lisa Geng and her husband, Glenn, it was a major tip off that something was definitely wrong with their second child who was born a very healthy baby.

The Gengs recalled that at eleven months of age, Tanner developed two cases of roseola back to back with very high fevers.  After the fevers, he lost the ability to say "da" for dad, as he had done before.  He could still say "ma" but, could only say "mmm" for everything else.

"Looking back there were signs before he turned two that he had problems.  But compared to our older son Dakota who had severe respiratory and developmental problems due to a traumatic birth, Tanner seemed so advanced." said Geng. "but, not being able to blow out the candles was a real wake up call for us."

The Gengs sought a diagnosis for their son's speech problems and were finally given a diagnosis of apraxia, a disorder which results in difficulty coordinating the oral-motor movements necessary to produce and combine speech sounds to form syllables, words, phrases, and sentences.

In Tanner's case, he had verbal and oral apraxia meaning that he was unable to produce words an did not know how to move his mouth, cheeks, and tongue to make sounds. "He was not even aware of his own tongue." said Geng.  "If you put peanut butter on his upper lip, he didn't know how to lift his tongue to lick off the peanut butter."

"With apraxia, the child's brain knows what it wants the body to say or do, but it can't get the message out of the mouth or get the facial muscles to form the words." explained Lauren Zimet CCC/SLP, a Children's Specialized Hospital speech language pathologist who works with children with apraxia.  "Motor planning is the first step in language skills.  Children with apraxia have a shortage of speech sounds or phonemes."

Some children with verbal apraxia may only be able to utter a few sounds, whereas, others may be able to say a few words but have difficulty stringing them together to make a sentence.  Those with oral apraxia do not know how to move their facial and tongue muscles to make sounds.   For some, the apraxia may also affect their fine motor skills, making everyday tasks such as dressing and writing difficult.

Apraxia is a mysterious disorder in which a child may be able to say a word one day, but not the next. Parents of children with apraxia often report that it seems as if their children "lose" words without explanation.

According to his mother, Tanner experiences episodes in which he cannot perform a task that he was able to do the day before, such as putting on his socks and shoes.  He is unable to recall the necessary movements and sequencing.

For children with apraxia it can be a very frustrating condition for though they cannot speak, they often have average to above average intelligence.  Many can even read and write perfectly but cannot speak.  

Another area of frustration is the lack of information on the cause of apraxia, which is thought to be neurologically based and may be present from birth or develop later on.  While the Gengs believe their son's apraxia is due to his bouts with roseola and high fevers, there is no clear reason why some children have the disorder.

What is known is that speech therapy, and occupational therapy in the case of fine motor difficulties, can help and the earlier the better.  According to Zimet, children with apraxia benefit from intensive therapy for motor planning and parent involvement is key.

"A child will not make progress is they only receive reinforcement during therapy sessions." explained Zimet.  "The child's parents and other caregivers need to learn the therapy techniques and reinforce them at all times."

Since each child responds to the various therapies in differing degrees, Zimet stressed that the therapy should be individualized for each child.

"There is no one therapy method that works best.  I suggest an eclectic approach, taking the best from each method and individualizing it for each child and family.  Explore different therapies or techniques, especially if the child seems to be plateauing.  Again, daily reinforcement of whatever therapy technique is being used is important.  Sounds can come and go, but with continual reinforcement they are more likely to stay" stressed Zimet.

Until children with apraxia are able to communicate effectively verbally. they may require an alternative form of communication, such as sign language.

"Signing is a viable means of communication," explained Zimet.  "There are parents who may worry that if they teach their child sign language, the child may not want to then develop their speech.  But, the research hasn't shown that."

Communication books also can be helpful.  Zimet suggests that the book, a type of picture book, be made with the child and be a fun experience.  It should be personalized and include categories such as food, toys, routines, and dressing.

According to Zimet, use of signing and communication books helps alleviate frustration for the child and the parents, reducing behavioral issues and fostering self-esteem.

"Any type of vocalization along with a sign or pointing to a picture is great." said Zimet.  "The child may just be able to day "da" for dog at first but through repetition the therapist and family can help the child form the word.  In the meantime, the child is able to communicate with others."

Again, Zimet stresses the importance of repetition and family involvement, something that Barbara Sullivan of Westfield has proven to show results.

Like, Tanner, Barbara's son, Christopher, who recently turned three, has apraxia.  She learned through Zimet who she describes as phenomenal, the importance of facial stimulation.

"I was determined to help Chris>" explained Barbara. "One day after Lauren explained facial stimulation, I sat with him in front of the mirror and showed him how to form words." By the end of the first day he could say what every mother years to hear - "mommy"

While Chris is making progress. Sullivan reports that is was not easy to get the process rolling.  "When Chris was 15 months old I felt that there was something wrong with his speech but his pediatrician wouldn't entertain the idea." she said.  "At eighteen months his speech wasn't any better.  He could only say "dat" and would point to everything.  At nineteen to twenty months he could say "titi" for the baby sitter, "baaa" for Mom, and "daaa" for Dad.  The only other word he had in his vocabulary was "phat"

The Sullivan's pushed for an evaluation and soon learned that their son had apraxia.

Once a proper diagnosis had been made, it is important to find a therapist who can develop a rapport with your child.  According to Zimet, many children with apraxia feel nervous and anxious attempting to speak in front of the others because of the difficulties they have.  Therapists need to make the sessions positive and fun to relieve and lay the foundation for a successful therapy session.

The Sullivan's add that it is important to find someone who is willing to take the time to look at the whole child.  Child, had difficulty sitting still for therapy sessions and paying attention. His other CSH speech therapy, Mara Friedman, suggested that they investigate what was causing the hyperactivity.

"It turns out he is allergic to red dye.  Once we cut out foods that contained the dye, he was significantly less hyperactive." reported his mom.

Now that Chris is less active.  Friedman is able to work on developing Chris' facial muscles by having him blow horns and bubbles.

The Sullivan's work with Chris everyday at home, modeling how to say things and reinforcing what he has learned.  They even have goals and homework each week from Friedman.

"Instead of worrying there are things we can do to help him now." exclaimed Sullivan.

When they do have worries they have other families they can share them with thanks to the initiative of the Gengs.

"When Tanner was first diagnosed with apraxia, I looked for a parent support group but soon found that there are only seven groups in the entire world for apraxia.  None of them were in New Jersey." said Lisa (The closest one was eight hours away) "Lauren suggested that I start one here.  So I did."

Twenty-five people attended the first meeting of the Children's Apraxia Network this past August.  Children's Apraxia Network, which was founded by Geng, soon hit a membership of 100 people.

"The response has been overwhelming.  People from Pennsylvania, Connecticut, New York, and Southern New Jersey, have made the trip so that they can meet other parents and professionals and learn more.  There is so little out there that we have now become a resource for parents and professionals alike." said Geng

Professionals, such as Zimet, have addressed the group to help parents sort through this mysterious disorder.

"It can be a roller coaster for parents and their children." said Zimet.  "They need to be reminded of how far their child has come and to build on past successes."

She suggests that parents keep a journal noting new sounds and words their child has mastered.  They also should note challenges, so that thy next time their child encounters a difficult period they can look back and see previous achievements and they progress they have made.

"The key is to identify the problem as early as possible, find a therapist and therapy techniques that work with your child and keep up the reinforcement,"stressed Zimet.  "many of these children can become effective communicators over time."...

From The LCP Solution book

DYSPRAXIA/APRAXIA 

THE "LELLOW" BREAKTHROUGH

Three-year-old Tanner, standing in the bathroom of his family's New Jersey home picked up a pink comb, pointed to a yellow stripe that ran through it, and said, "Lellow." It was the first 'real' word he had ever spoken and it came after just three weeks of supplementation. "I almost fell over," says his delighted mother, Lisa Geng. "It was the breakthrough we had been waiting for. It was incredible." Within a few days, Tanner's vocabulary increased to seven words. Within five weeks, he had mastered twenty-two words.

Tanner, during his first year of life, had seemed like a normal, healthy baby and by the age of eleven months was babbling normally and saying "ma" and "da." Then, after a bout of very high fever, he stopped talking. Photographs show an unsmiling two-year-old. "No matter how hard the photographers tried he just would not smile. He was lethargic," says Lisa. Typically, everyone kept telling her that he was just a late talker, but Lisa and her family became increasingly concerned and pushed for a hearing and speech evaluation. Four months of speech therapy led to an official diagnosis of severe apraxia of speech. Tanner was two years, eight months old. During the four months of speech therapy he had learned to say basic sounds such as "sh," "ch," "t," and "s" with some prompting. He had learned how to blow bubbles and could move his mouth more than before. But he found it impossible to take the "ch" sound and put it together with the "oo" sound to make "choo."

As soon as they heard that Tanner was apraxic, Lisa and husband, Glenn, began to search for information. "We were shocked to find out how little support and information there was at the local level, and this was in a fairly affluent area close to New York," says Lisa. In desperation, the couple turned to the Internet and discovered the apraxia-kids listserv. After reading other parents' positive comments about LCP supplementation and consulting Lisa's aunt, a retired nursing teacher at Long Island University, they decided to give it a try.

Three weeks later they were thrilled with the results of that decision. "I know that it can take as long as three months of supplementation for any benefits to be noticed but we saw results with Tanner in three weeks. I'm not exaggerating," says Lisa. Tanner's Early Intervention therapist told them that he had become "a different child" and the therapist was so impressed that she began recommending LCP supplementation to other patients.

Lisa and Glenn, however, took him off supplementation for a while when he was going through testing for the disabled preschool program in their home town. "His improvement had been so dramatic we were actually afraid that he would test too well to be accepted," says Lisa. The result was calamitous. "It was the saddest thing. We will never do that to him again. The poor little thing was no longer able to say as much, and he just didn't seem to learn. He wasn't able to 'parrot' us like he had when taking the supplements. And for the first time he was frustrated to the point of tears."

Back on supplementation, Tanner showed steady improvement and broadened his vocabulary. Adds Lisa, "He's able to say many things now. Just last night he looked at his daddy, and said, 'Love you.' What a wonderful moment that was." Lisa says that the only negative is trying to get Tanner to actually take the supplements because of the fishy taste. She does her best to disguise it by mixing the contents of the capsules with cereal and other foods.

Lisa and Glenn became so interested in helping Tanner and other kids like him that they started a non-profit organization, Children's Apraxia Network, based at the Children's Specialized Hospital in Mountainside, New Jersey. One of the group's main goals is to raise funds to enable parents of "late-talking children" to have consultations with speech language pathologists when their kids are at an earlier age. Says Lisa, "What parents hear is, 'Wait until he's three and then we'll run some tests.' That's too late when a child has a real problem and should be getting treatment earlier."

Background on CHERAB 

CHERAB Foundation formed in January 2001 was incorporated as a nonprofit to ensure the spread of education and training programs with a purpose to improve the health and welfare of all children with speech delays and disorders with a focus on apraxia or other severe neurologically based speech conditions. The cornerstone of our efforts is to bring professionals from different disciplines together to provide the most comprehensive evaluations and treatments for these children.  

CHERAB stands for all we embrace, “Communication Help, Education, Research, Apraxia Base.” Through the foundation we raise public awareness and disseminate basic information regarding early childhood speech conditions throughout the professional and parental communities. The Foundation focuses on providing and funding research, education, screening and information for speech delays vs. disorders worldwide.  

CHERAB Foundation Past and Present  

Due to the dire lack of information, focus on, and treatment, within the medical community towards complex speech and language disorders, Lisa Geng - herself a parent looking for help, began an small support group that grew by leaps and bounds since it’s inception. Having reached global exposure after being featured in the media greatly assisted in bringing experts from all over the world as guest speakers for the group meetings. Once realizing the enormity of this problem worldwide, Lisa started an informational website and a grouplist, which together serve a vital role in helping both the parents and professionals who care for all types of late talking children.  

Based on the ever-growing demand the CHERAB Foundation was formed. Dr. Marilyn Agin – a developmental pediatrician and a Medical Director for Early Intervention in NYC is the Medical Director. The Foundation continues to bring medical, speech and educational professionals together with parents to help each other help the children “find a voice and a smile.”

CHERAB Foundation Scientific Programs

The following was from 'the First Apraxia Conference' July 23-24, 2001,Headquarters Plaza Hotel, Morristown, New Jersey USA

and was also presented at the Research Workshop - September 20-21 and on September 22, 2001  'Fatty Acids in Neurodevelopmental Disorders' St Anne’s College, Oxford, UK

CHERAB FOUNDATION SCIENTIFIC PROGRAMS

VERBAL APRAXIA/DYSPRAXIA and the THERAPEUTIC ROLE of
ESSENTIAL FATTY ACIDS:

The Perspectives of Speech Pathologists:

The Perspective of a Developmental Pediatrician:

A Time Line of Therapeutic Outcomes in
Speech/Communication

Conclusions:

CHERAB FOUNDATION PROFESSIONAL STAFF

Organizers and Scientific Panel Members of the First
Conference on Verbal Apraxia/Dyspraxia

 

CHERAB FOUNDATION SCIENTIFIC PROGRAMS

The first conference for therapy of verbal apraxia/dyspraxia entitled: "Verbal Apraxia/Dyspraxia and Essential Fatty Acid (EFA) Supplementation: A New
Potential Therapeutic Intervention," 23-24 July, 2001, Headquarters Plaza Hotel, Morristown, New Jersey, U.S.A., was organized under the auspices of the CHERAB
Foundation and the Consortium for Fatty Acids, Omega-3 Research Institute, Inc. The research findings described below were presented by CHERAB Foundation
professional staff to a panel of participating experts for their review. The panel recommended the initiation of clinical trials to validate the potential therapeutic effects of EFA supplementation in verbal apraxia and autism. The data was also presented as
three posters at the Conference on "Fatty Acids in Neurodevelopmental Disorders", September 20-21, 2001 Oxford, United Kingdom.

VERBAL APRAXIA/DYSPRAXIA and the THERAPEUTIC ROLE of
ESSENTIAL FATTY ACIDS:


Marilyn C. Agin, M.D., New York City Early
Intervention, New York, and CHERAB Foundation,
Gillette, New Jersey

Robert Katz, Ph.D., Consortium for Fatty Acids,
Omega-3 Research Institute, Inc., Bethesda, Maryland
and CHERAB Foundation, Gillette, New Jersey

Lori L. Roth, CCC SLP, CHERAB Foundation, Gillette,
New Jersey

Verbal Apraxia (VA) affects the programming of the
articulators and rapid sequences of muscle movements
for speech sounds. These children frequently display
neurologic “soft signs” including hypotonia, sensory
integration disorder, and motor planning difficulties.
The speech assessment reveals a limited repertoire of
consonant sounds, inconsistency of speech errors, and
sound/syllable omissions. These children usually have
near-normal receptive language and intelligence. It is
a difficult speech disorder to treat with variable
outcomes. Many children never develop intelligible,
conversational speech. Dramatic leaps in speech
progress have been noted with essential fatty acid
(EFA) supplementation by parents and professionals.
The most often used EFA supplement is a 1000 mg
capsule containing a mixture of DHA (docosahexaenoic
acid, 99 mg.), EPA (eicosapentaenoic acid, 148 mg.),
GLA (gamma-linolenic acid, 40 mg) available under the
name of ProEFA or Complete Omega and manufactured by
Nordic Naturals, California.


The Perspectives of Speech Pathologists:

Our objective was to assess potential therapeutic
effects of essential fatty acid (EFA) supplementation
of children with VA by surveying speech pathologists
that provide speech therapy to the supplemented
children. A total of nineteen speech pathologists
(eighteen of them independent), returned the
questionnaires that constituted the professional
anecdotal case reports included in this analysis. The
patient population consisted of 16 males (including
one pair of identical twins) and 3 females, mostly
between 27-97 months of age. Seventeen of the 19
patients were supplemented with ProEFA (13 with one
1000 mg softgel capsule/day and four with two).
Outcome  variables measured included the following:
speech,
affect, muscle tone, muscle control, behavior, social
skills, attention, eye contact, and academic ability.
Post-supplementation, the children were rated
according to the following
scale: 1=not sure, 2=no change, 3=subtle change,
4=moderate 5=significant, 6=outstanding change. 

The analysis of data led to the following conclusions:
a) EFA supplementation resulted in a marked shift in
verbal statement ability from the nonverbal end toward
the singing end of a hierarchical sequence, i.e., from
decreases in nonverbal, gesturing, grunting, single
sounds, to increases in single words, multiple words,
sentences and singing. b) Seventeen of the 19 subjects
(89%,) showed varied degrees of improvements in the
Speech outcome variable. Of these improvements 9 (53%)
were subtle, 5 (29%) were moderate and 3 (18%) were
significant. Only two patients (11% of 19) showed no
improvement.

The nineteen reports were divided in two subgroups
according to the effect of supplementation on the
speech/communication outcome variable. A statistical
test indicated that improvements in speech of patients
in Subgroup 2 (containing all eight cases representing
moderate and better than moderate improvements scores
of 4 and 5 respectively), are significantly higher
than the improvements in speech of patients in
Subgroup 1 (containing the eleven cases representing
the no-change and subtle improvement scores of 2 and 3
respectively). Three patients in Subgroup 2 were
diagnosed with verbal apraxia (one mild, one moderate
and one severe case). In addition, the mild case also
had feeding-swallowing disorder. A fourth patient was
diagnosed with mild VA and oro-motor hypotonia,
additional three patients had severe VA with hypotonia
and sensory integration disorder (SID). One of these
also had autism and another was suspected to have
ADHD. The eighths patient had mild VA with hypotonia
and SID. The patient with autism showed moderate
improvement in speech and better than moderate
improvements in behavior and attention. Descriptive
statistics (mean and standard deviation) of all
variables surveyed in the population of Subgroup 2
indicate (in order of decreasing means) that
improvements in Speech (4.4(0.5) > Attention (4.0(1.5)
= Behavior (4.0(1.9) > Affect (3.4(0.6) = Social
Skills (3.4 (1.4) = Eye Contact (3.4(1.7) > Muscle
Tone (3.1(1.6) > Muscle Control/Coordination
(2.7(1.0).

The Perspective of a Developmental Pediatrician:

Anecdotal case reports provided by the CHERAB
Foundation's Developmental Pediatrician were also
analyzed. Ten children were supplemented: Nine had the
diagnosis of VA; one had a dual diagnosis of VA and
pervasive developmental disorder (PDD-NOS), and one
was autistic with an expressive language disorder.
Eight of the children were receiving 1 capsule/day of
ProEFA and 2 were receiving 2 capsules/day. The
majority of the children had been supplemented for at
least three months. All of the children were receiving
speech therapy at least three times a week. Age range
was 32 months to 96 months old. Descriptive statistics
were used to analyze the data. The same outcome
variables and scoring scales have been used as above.
The variables that showed the most improvement were
speech and attention,
with means of 4.7 (SD=1.3) and 4.1 (SD=1.2)
respectively. According to the scale, this correlated
with moderate to significant improvement. To a lesser
degree, there was
improvement in affect and eye contact with means of
3.8 for both. There were no significant changes in the
other variables. The two children on the autistic
spectrum showed significant improvements in speech and
eye contact, with means of 5.0 and 5.5 respectively. 

A Time Line of Therapeutic Outcomes in
Speech/Communication


Speech therapy intervention has been an integral part
of a program designed to treat children diagnosed with
VA. Speech therapy approaches from oral motor
patterning to “traditional” articulation drills yield
fair success over lengthy periods of time. The
potential therapeutic effect of EFA supplementation
initiated by parents was followed in four children
with VA by the CHERAB Foundation's speech pathologist.
Outcomes of the study are reported here. An initial
evaluation consisting of a receptive and expressive
language test, oral motor coordination examination and
verbal/sound production test (Receptive One Word
Vocabulary Test, Expressive One Word Vocabulary Test,
Preschool Oral Motor Functioning Scale, Kaufman Speech
Praxis Test) was performed on each subject prior to
EFA supplementation. In general, the children
demonstrated age-appropriate receptive language
skills, extreme difficulty coordinating articulator
movements for sound production, and a significant
delay in expressive language skills. The children were
given a daily dose of one 1000mg capsule of ProEFA.
Two weeks into supplementation, each child began
demonstrating improved attention to task, sustained
eye contact with the therapist and calmer general
participatory behavior. Beyond this time, each child
demonstrated an improvement in the level of verbal
statement specific to the baseline performance
obtained in testing. One of the children began
supplementation essentially non-verbal and progressed
to two-word utterance production within 2 months.
Outcome measures included standardized scores from
general tests of language and measures taken from
language-sample analyses as well as an objective scale
grading speech production from non-verbal to singing.
There were modest to significant changes in
standardized measures of language after 2-3 months of
EFA supplementation in all four cases using an 80%
criterion confidence interval. These were
substantiated by the clinically significant changes in
language sample measures. Such improvement
characteristically occurs after 9 to 12 months of
intensive speech therapy intervention. 

Conclusions:

The above preliminary data provide evidence that:

EFA supplementation has great potential in
accelerating speech gains in children with verbal
apraxia/dyspraxia. Thus, EFA supplementation in
conjunction with speech therapy improved pre-speech
behaviors (eye-contact, attention to task), speech and
language production (single sound, word and sentence
production), imitation skill accuracy and decreased
inconsistent imitation errors, distractibility and
groping behaviors.

Improvements are greater than would be expected from
speech therapy alone

Verbal apraxia appears to be present in a percentage
of children on the autistic spectrum and an
association could be possible between VA and other
disorders/syndromes, such as: hypotonia, sensory
integration disorder, dysarthria, attention deficit
hyperactivity disorder, Kabuki Syndrome and cerebral
palsy. Further exploration of the basic and clinical
aspects of these phenomena appears warranted.

A panel of scientific experts at the July 23-24
Conference discussed the evidence presented above and
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
and recommended that a randomized, placebo-controlled
multi-center clinical trial of EFA and placebo
supplementation to be undertaken as soon as possible.
For example, 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.

CHERAB FOUNDATION PROFESSIONAL STAFF

Marilyn C. Agin, M.D., Medical Director, CHERAB
Foundation, graduated from New Jersey Medical School
in 1986, followed by a combined residency in
Pediatrics and Physical Medicine and Rehabilitation at
New York University Medical Center. She is board
certified in both fields. Prior to medical school, Dr.
Agin received her master’s degree in Communication
Disorders and was a practicing speech pathologist.
Currently, Dr. Agin is the Medical Director of the New
York City Early Intervention Program and does private
neurodevelopmental evaluations primarily for children
with communication disorders, learning disabilities,
and autism,. She is a member of the New York City
chapter of the Committee on Children with Disabilities
of the American Academy of Pediatrics (AAP), and has
been appointed to the Executive Council of the New
York City chapter of the AAP.


Robert Katz, Ph.D., Director for EFA Research, CHERAB
Foundation, received his degree in Organic/Medicinal
Chemistry from the Hebrew University, Jerusalem in
1972. During his postdoctoral fellowship (1972-1973)
at the National Institutes of Health
(NIH), Bethesda, Maryland he worked in
computer-assisted drug design of analgesics and
molecular pharmacology of neurotransmitters. From 1978
to 1993, Dr. Katz was Director of Metabolic Diseases
Research Program,
National Institute of Diabetes, and Digestive and
Kidney Diseases, NIH where he administered and managed
nation-wide research programs in membrane structure
and function, membrane protein crystallization,
structural biology (proteomics), enzyme replacement
and gene therapy, etc,. He organized workshops and
conferences in these areas and identified research
directions in need of development. Since leaving the
NIH, (1993), Dr. Katz has developed DHA- and
EPA-derivatized polycationic-lipophilic drug carriers
to the CNS. In 1998 he founded the Omega-3 Research
Institute, Inc. (O3RI), where he co-organized
international workshops on omega-3 fatty acids in
brain function, in diabetes and its cardiovascular
complications, in molecular and cellular aspects of
cancer and recently in verbal apraxia/dyspraxia.
During the last year Dr. Katz founded the Consortium
for Brain Fatty Acids, O3RI, a "center without walls"
that is providing a broad range of expert research
support to parties that require such. Dr. Katz
is co-developing the CHERAB Foundation's EFA-based
programs.

Lori L. Roth, MA, CCC-SLP, is a CHERAB Foundation
Speech-Language Pathologist and Oral Motor Specialist
with over 25 years of experience. She received her BA
degree in Psychology from G. Washington University in
Washington, D.C. in 1972. In 1974 she was awarded her
Masters of Speech and Audiology from the Catholic
University of America in Washington, DC. Ms. Roth’s
experience includes home- and hospital-based
rehabilitation, private and public school intervention
and private practice. Lori Roth was instrumental in
establishing an Infant Stimulation Program (called
Early Intervention) in Annapolis, Maryland. She has
mentored and trained graduate students in Speech and
Language Pathology from New York University, Columbia
University, Montclair State University and The College
of New Jersey as well as practicing therapists in the
State of New Jersey. Ms. Roth has presented
professional workshops for colleagues and regularly
acts as a consultant for private and public schools.

Organizers and Scientific Panel Members of the First
Conference on Verbal Apraxia/Dyspraxia


"Verbal Apraxia/Dyspraxia and Essential Fatty Acid
(EFA) Supplementation: A New Potential Therapeutic
Intervention," 23-24 July, 2001, Headquarters Plaza
Hotel, Morristown, New Jersey, U.S.A.,

Organizers:

Marilyn C. Agin, M.D., Medical Director, Early
Intervention, New York City, New York, and Medical
Director, CHERAB Foundation, Gillette, New Jersey.
(Also a scientific panel member)

Robert Katz, Ph.D., Managing Director, Consortium for
Brain Fatty Acids (CFBFA), Omega-3 Research Institute,
Inc., Bethesda, Maryland and EFA Director of Research,
CHERAB Foundation, Gillette, New Jersey (Also a
scientific panel member).



Scientific Panel Members:

Susan E. Carlson, Ph.D., Professor, University of
Kansas, Kansas City, Kansas, Member Consortium for
Brain Fatty Acids (CFBFA)


Joseph Hibbeln, M.D., Chief, Outpatient Clinic
National Institute of Alcoholism and Alcohol Abuse,
NIH, Bethesda, Maryland, Non-affilited Collaborator,
CFBFA


Nancy Kaufman, M.A., CCC/SLP, Director, Kaufman
Children's Center for Speech Language and Sensory
Disorders,
West Bloomfield, Michigan 


Ann Moser,B.S., Manager, Peroxisomal Diseases and
Fatty Acid Profiles Clinical Laboratory,Kennedy
Krieger Institute, Baltimore, Maryland. (Also a
component laboratory of the CFBFA)


Jennifer Hill-Karrer, Ph.D., Associate Professor,
University of Kansas Medical Centre, Kansas City,
Kansas, and Collaborator CFBFA


Lori Roth M.A., CCC/SLP, Speech Pathologist, CHERAB
Foundation


Andrew Zimmerman, M.D., Professor, Johns Hopkins
University and Kennedy Krieger Institute, Baltimore,
Maryland, and Collaborator, CFBFA.


Guest Panelist:

Alexandra J. Richardson, MA, D.Phil., Senior Research
Fellow in Neuroscience, Imperial College School of
Medicine, MRI Unit, Hammersmith Hospital, London; and
University Lab. of Physiology, Oxford.


The Administrative Organizers:
CHERAB Foundation


Lisa Geng, President, Suzanne Smolyar, Executive Vice
President, and Glenn W. Geng Executive Director,
Treasurer

_______________________________________________________________________


CHERAB FOUNDATION

COMMUNICATION, HELP, EDUCATION, RESEARCH, APRAXIA BASE

Official Post Statement from The Scientific Conference

How did this Apraxia /EFA Scientific Conference Come About?

Scientific Organizers

Scientific Panelists

Administrative Organizers

Conference Information/Agenda

EFA Resources

Apraxia...What's that?  (and how do EFAs tie in?)  From a developmental pediatrician's point of view.  By Marilyn Agin MD

EFA...What's that? (and how does apraxia tie in?)  From a scientist's point of view.  by Robert Katz PhD 

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

Post conference Statement
 
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.,
 
Scientific Panel Members:
 
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.
Guest Dinner Speaker:
 
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

 

Administrative Organizers:

CHERAB Foundation

Lisa Geng, President, Suzanne Smolyar, Executive Vice President, and Glenn W. Geng Executive Director, Treasurer

 

C.H.E.R.A.B. Foundation's
Emergency Fact-Finding

"First Scientific Conference on Therapy for Verbal Apraxia/Dyspraxia"

"Essential Fatty Acids and Verbal Apraxia: A New Potential Therapeutic Intervention"
July 23-24, 2001,Headquarters Plaza Hotel, Morristown, New Jersey

"The First Scientific Conference on Therapy for Verbal Apraxia/Dyspraxia"

6:00 p.m. -- 10:00 p.m.
July 23, 2001,Headquarters Plaza Hotel, Morristown, New Jersey

  Untitled Document

Upcoming Events

Inside Edition TV

Ask The Doctors

CHERAB Home

Join Our Group

Press Room 

Index

Apraxia what's that?

Scientific Programs 

Success Stories

Untitled Document

Upcoming Events

Inside Edition TV

Ask The Doctors

CHERAB Home

Join Our Group

Press Room 

Index

Apraxia what's that?

Scientific Programs 

Success Stories

 

CHERAB Foundation

Send mail to support with technical questions or comments about this web site. 
Copyright © 1998 - 2003
Date of last update: February 17, 2003

To find your way around, click here for the index

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." -- Margaret Mead, anthropologist

Send mail to Support with technical questions or comments about this web site. 
Copyright © 1998 
Last modified: Friday, June 03, 2005

To find your way around the CHERAB part of this site please click here for the index.

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." -- Margaret Mead, anthropologist

Send mail to Support with technical questions or comments about this web site. 
Copyright © 1998 
Last modified: Friday, June 03, 2005

To find your way around the CHERAB part of this site please click here for the index.

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." -- Margaret Mead, anthropologist

Send mail to Support with technical questions or comments about this web site. 
Copyright © 1998 
Last modified: Friday, June 03, 2005

To find your way around the CHERAB part of this site please click here for the index.

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." -- Margaret Mead, anthropologist