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, focused on “Essential Fatty Acids (EFAs) and Verbal Apraxia: A New Potential Therapeutic Intervention.”
Post Conference Statement
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.
SCIENTIFIC PANEL MEMBERS:
Susan E. Carlson, Ph.D., Professor, University of
Kansas, Kansas City, Kansas
Joseph Hibbeln, M.D., Chief, Outpatient Clinic
National Institute of Alcoholism and Alcohol Abuse,
NIH, Bethesda, Maryland,
Nancy Kaufman, M.A., CCC/SLP, Director, Kaufman
Children’s Center for Speech Language and Sensory
West Bloomfield, Michigan
Ann Moser,B.S., Manager, Peroxisomal Diseases and
Fatty Acid Profiles Clinical Laboratory,Kennedy
Krieger Institute, Baltimore, Maryland.
Jennifer Hill-Karrer, Ph.D., Associate Professor,
University of Kansas Medical Centre, Kansas City,
Lori Roth M.A., CCC/SLP, Speech Pathologist, CHERAB
Andrew Zimmerman, M.D., Professor, Johns Hopkins
University and Kennedy Krieger Institute, Baltimore,
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.
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. (Dr. Hugo Moser is the one that led the trials to validate Lorenzo’s Oil and was featured in the movie of the same name)
THE ADMINISTRATIVE ORGANIZERS:
Lisa Geng, President, Suzanne Smolyar, Executive Vice
President, and Glenn W. Geng Executive Director,
How Did This Conference Come About
Ms. Lisa Geng, President and founder of the CHERAB Foundation, has been supplementing the regular diet of her son, Tanner, diagnosed with verbal apraxia, with a nutritional supplement containing a mixture of essential fatty acids (EFAs) containing omega-3 and omega-6 fatty acids (NN ProEFA 369). The results of the supplementation have been remarkable in that Tanner started to talk and his speech improved rapidly. After sharing her experience with hundreds of parents through the CHERAB Foundation, many have adopted the EFA supplementation approach and reported improvements in their child’s speech. Through surveys initiated by Lisa Geng of the Cherab Foundation, positive results had been noted by parents. Professionals including teachers, SLPs, and MDs supervising apraxic children, reported similar progress. It was found that a formula higher in EPA to DHA (Omega 3) with a small amount of GLA worked best and that was more important than dosage.
Ms. Geng asked Robert Katz, PhD, a Health Scientist Administrator with about 25 years of research program management experience and currently president and co-founder of the Omega-3 Research Institute, Inc. where he initiated and co-organized three international workshops on physiologic effects of omega-3 fatty acids to suggest possible approaches to validating these initial reports. The First Scientific Conference Dedicated to the Therapy of Verbal Apraxia/Dyspraxia was approved by the CHERAB Foundation and overseen by Joseph Hibbeln, M.D., Chief, Outpatient Clinic National Institute of Alcoholism and Alcohol Abuse, NIH, Bethesda, Maryland. More history here.
To learn about the importance of EFAs and their roles in the Central Nervous System see the following books:
2. Andrew L.Stoll, M.D., “The Omega-3 Connection,” Simon and Schuster, New York, NY, 2001
4. Artemis P. Simopoulos, M.D., and Jo Robinson, “The Omega Plan,” HarperCollins Publishers, New York, NY, 1998