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PAST CONFERENCES
November 2 - 4, 2006
13th Annual International Scientific Meeting
We are proud to have co-hosted this Conference in November, 2006 in Brisbane with our friends at the VCFS Educational Foundation Inc. Some (redacted) extracts from the programme …
The 13th International Scientific Meeting
of the Velo-Cardio-Facial Syndrome Educational Foundation, Inc.
in partnership with
The Velo-Cardio-Facial Syndrome Foundation of Queensland, Inc
was held in Brisbane, Australia on 2 to 4 November, 2006
The local host for the meeting was the VCFS Foundation of Queensland, the most active support group in Australia for persons with the deletion. Meetings of the VCFS Educational Foundation are unique and very special, and provide formal and informal opportunities for professionals and families affected by VCFS from around the world to meet, to talk, to get to know one another, and to learn from each other.
About the Educational Foundation and Annual Meetings
The mission of the VCFSEF is to improve the lives of individuals with VCFS through increased public and professional awareness and education. Its annual meetings have reached thousands of professionals, parents, and people with VCFS since 1994. This meeting is the authoritative source of the most current information about this common genetic disorder, which is also known by a variety of other names including Di George syndrome, 22q11 deletion syndrome, and Sedlakova syndrome.
Faculty
The international faculty for the meeting included many of the world’s foremost experts in areas including psychiatry, speech and language, cardiology, molecular genetics, clinical genetics, education, feeding, reconstructive surgery, and intellectual performance. People who have VCFS or who have children with VCFS are invited to participate as faculty by making presentations that highlight their personal experiences. These presentations have been very popular at past meetings.
One speaker was Dr Robert Shprintzen Ph. D, head of the Centre for Genetic Communicative Disorders at University Hospital, Upstate Medical University, New York. Dr Shprintzen is the world's foremost authority on this complex and perplexing - and surprisingly common - genetic disorder.
Other distinguished professionals, including Dr Stephan Eliez of the University Hospital of Geneva and Dr Doron Gothelf of Schneider Children’s Hospital, Israel presented the latest research data and clinical findings in neuro-psychiatry and clinical psychiatry. Australian psychiatrists, including Prof Brett McDermott, of the Mater Children’s Hospital, and psychologists, Dr Belinda Barton and Dr Neil Nicoll of the Children’s Hospital at Westmead Educational Research Institute constituted one of the world’s best qualified and experienced cohorts of doctors expert in the psychiatry, psychology, and behaviours of VCFS.
From the UK, Dr Ahmad al-Khattat, a podiatrist who has been studying the syndrome for many years.
Speech pathology, too, was particularly well catered for. Renowned speech pathologist Dr Karen Golding-Kushner (author of the pre-eminent text in speech therapy for VCFS patients, Therapy Techniques for Cleft Palate Speech and Related Disorders) presented a paper. Dr Golding-Kushner was joined by Ms Suzi Drevensek of the University of Sydney. Suzi has been researching the incidence and speech findings in the Australian population for many years.
The educational strategies for VCFS children were also a focus. Ms Donna Cutler-Landsman, from Wisconsin, USA, is the world’s pre-eminent expert in this field.
Other international and Australian experts covered the fields of Developmental Paediatrics, Sexual Development and Fertility Control, Molecular and Clinical Genetics, Orthodontic and dental issues, Cranio Facial Surgery, including velo-pharyngeal insufficiency (VPI) Ophthalmology and Estate Planning for disabled people.
Social Events
We staged several social events for both faculty and registrants. These events provided a wonderful opportunity for meeting and greeting people from all over the world who share common experiences. Set that in Brisbane, a vibrant city and a wonderful place to visit, this was one of our best meetings ever!
Forgive us, but (we are proud to record) this was the programme, in detail …
Thursday Morning, 2 November 2006
8:00 – 9:00: Registration
9:00 – 9:20: Opening ceremonies and introductions; Karen J. Golding-Kushner, Executive Director, VCFSEF Stephen Russell, President, VCFS Foundation (Qld), Past President, VCFSEF, Regional Director for Australia and the Pacific Rim
9:20 – 9:40: Keynote Address: Reaching the unreached: Lessons from a community based project in rural South India; Roopa Nagarajan, Sri Ramachandra Medical College and Research Institute, Chennai, India
9:40 – 9:50: A Brief History of the VCFSEF; Robert J. Shprintzen, Syracuse, NY
9:50 – 10:20: Cardiovascular anomalies associated with VCFS; Kazuo Momma, Tokyo, Japan
10:20 – 10:40: Developmental issues in VCFS. Honey Heussler, Brisbane, Qld, Australia
10:40 – 10:50: Questions and Discussion
10:50 – 11:05: Refreshment break
11:05 – 11:20: Growth patterns in VCFS; Anne Marie Higgins, Abraham Lipton, Robert J. Shprintzen, Syracuse, NY, USA
11:20– 11:40: Feeding disorders and their treatment in VCFS; Robert Beecher, M.S., Milwaukee, WI, USA
11:40 – 12:10: Leg pains in VCFS; Ahmad Al-Khattat, Northampton, UK
12:10 – 12:15: Coping with family prejudices of finding out that one has velo-cardio-facial syndrome as an adult; Raymond Tanner, Aberfoyle Park, South Australia
12:15 – 12:25: Discussion
12:25 – 1:45: Lunch with the experts
Estate Planning. Peter Wilson, solicitor.
Developmental issues. Honey Heussler.
Leg pains. Ahmad Al-Khattat.
Thursday Afternoon, 2 November 2006
1:45 – 2:15: Profiling VCFS in the Australian population; Suzi Drevensek, Sydney, NSW, Australia
2:00 - 2:25: Diagnosing speech disorders in VCFS and planning surgical treatment; Robert J. Shprintzen, Syracuse, NY, USA
2:25 – 3:05: Surgical management of hypernasal speech in VCFS: a special disorder requiring special techniques; Sherard A. Tatum III, Syracuse, NY, USA
3:05– 3:20: Questions and discussion
3:20– 3:35: Refreshment break
3:35– 4:20: Speech therapy in VCFS from start to finish; Karen J. Golding-Kushner, East Brunswick, NJ, USA
4:20– 4:50: Panel -Coordinating speech therapy and surgery: What do you do? When do you do it? Why do you do it? Suzi Drevensek, Sydney, NSW, Australia; Karen J. Golding-Kushner, East Brunswick, NJ, USA; Sherard A. Tatum III, Syracuse, NY, USA; Richard Thiele, Brisbane, Qld, Australia
4:50– 5:00: Questions and Discussion
Friday Morning, 3 November 2006
9:00 – 9:45: Educational issues and strategies in VCFS; Donna Landsman, Madison, WI, USA
9:45 - 10:00: The mathematical profile of children with VCFS; Belinda Barton, Neil Nicoll, Susan van der Berg, David Dossetor, Sharon Watt, Arthur Shores, Meredith Wilson, Sydney, Australia
10:05 – 10:15: Questions and discussion
10:15 – 10:30: Refreshment break
10:30 – 10:55: Multiple related impairments in cognitive processing of objects and space in VCFS; Tony Simon, Ph.D., Sacramento, CA, USA
10:55 – 11:20: Brain connectivity differences in VCFS that might explain cognitive dysfunctions; Tony Simon, Ph.D., Sacramento, CA, USA
11:20 – 11:40: What can face processing tell us about cognitive and social development in VCFS? Bronwyn Glaser, Martin Debbané, Marie Schaer, Sandra Martinez, Lea Matasci, and Stephan Eliez, Geneva, Switzerland
11:40– 12:00: Social Cognition in Velo-Cardio-Facial Syndrome; Bronwyn Glaser, Geneva, Switzerland
12:00– 12:15: Questions and Discussion
12:15– 1:30: Lunch with the experts
Psychiatric issues. Stephan Eliez and Doron Gothelf
Speech therapy. Karen J. Golding-Kushner
Genetics. Robert J. Shprintzen, Tiong Trong
Friday Afternoon, 3 November 2006
1:30 – 1:45 : Longitudinal data on behavior in children with VCFS. Petra Klassen; Sasja Duijff; Henriëtte de Veye; Monique Sijmens; Jacob Vorstman; Frits Beemer, Utrecht, The Netherlands
1:45 – 2:15: Risk factors and developmental trajectories in VCFS; Doron Gothelf, M.D., Petah Tiqva, Israel
2:15 - 2:45: Behaviors and emotions from childhood to adulthood: implications for psychological treatment in VCFS; Stephan Eliez, M.D., Geneva, Switzerland
2:45 – 3:10: Treatment of ADD/ADHD in VCFS. Doron Gothelf, Petah Tiqva, Israel
3:10 – 3:25: Questions and comments
3:25 – 3:40: Refreshment break
3:40– 3:55: Risk factors for psychosis in VCFS. Vandana Shashi; Matcheri S. Keshavan; Jeffrey Nutche; Margaret N. Berry; Eve Lewandowski; Thomas R. Kwapil, Winston-Salem, NC, USA
3:55 – 4:10: Correlations between brain imaging and mental illness in VCFS. Linda E. Campbell; Angela F. Stevens; Eileen Daly; Rayna Azuma; William Cutter; Marco Catani; Xavier Chitnis; Robin Morris; Declan Murphy; Kieran Murphy, Newcastle, NSW, Australia
4:10 – 4:40: Brain imaging in VCFS: What we have learned and what is remaining to learn. Stephan Eliez, Geneva, Switzerland
4:40 – 4:50: Questions and discussion
4:50 – 5:15: Panel Session: Psychiatric illness in VCFS. What is it and how does it relate to cognitive deficits? Belinda Barton, Sydney, NSW, Australia; Stephan Eliez, Geneva, Switzerland; Doron Gothelf, Petah Tiqva, Israel; Brett McDermott, Brisbane, Qld, Australia; Neil Nicoll, Sydney, NSW, Australia
Saturday Morning, 4 November 2006
9:00 – 9:20: Same but Different: Dissecting the Phenotype of 22q11 Deletion Syndrome with
Molecular Genetics and Developmental Biology; Tiong Yang Tan and Agnes Bankier, Melbourne, Vic, Australia
9:20 – 9:45: What we have learned from the genomic study of 22q11 and where it will take us; Robert J. Shprintzen, Syracuse, NY, USA
9:45 – 10:00: Dopaminergic neurotransmission in VCFS; E. Boot; J. Booij; J. Zinstock; L. De Haan; D. Linszen; N. Abeling; Therese Van Amelsvoort, Amsterdam, The Netherlands
10:00 – 10:20: Panel Discussion: The importance of clinical genetics in the management of VCFS; Julie McGaughran, Brisbane, Qld, Australia; Vandana Shashi, Winston-Salem, NC, USA; Robert Shprintzen, Syracuse, NY, USA; Tiong Tan, Melbourne, Vic, Australia
10:20 – 10:30: Questions and discussion
10:30 – 10:45: Refreshment break
10:45 – 11:00: Does the cognitive and psychosocial profile of children with VCFS differ from an IQ matched control group?; Belinda Barton, Neil Nicoll, Susan van der Berg, David Dossetor, Sharon Watt, Arthur Shores, Meredith Wilson, Sydney, NSW, Australia
11:00 – 11:15: Social skills development and behavioural support strategies for children and adolescents with VCFS; Neil Nicoll, Sydney, NSW, Australia
11:15 – 11:30: Psychosexual issues in adolescents with VCFS; Sonia Grover, Melbourne, Vic, Australia
11:30 – 11:50: Mentoring programs for children with VCFS; Doron Gothelf, Schneider Children's Medical Center, Petah Tiqva, Israel
11:50 – 12:10: Coping with children who have learning and cognitive disabilities as they transition to adulthood; Philip Graves, Clayton, Vic, Australia
12:10 – 12:25 : Questions and discussion
12:25 Adjourn
> back to top
FACULTY
N. Abeling
Dept. of Genetic Metabolic Disorders
Academic Medical Center, Amsterdam, The Netherlands
Ahmad Al-Khattat, M.B.B.Ch.
Northampton, U.K.
Agnes Bankier, M.D.
Genetic Health Services Victoria
Melbourne, Vic, Australia
Rayna Azuma
Centre for Brain and Mental Health Research
University of Newcastle, Newcastle, NSW, Australia
Belinda Barton
Children’s Hospital Education Research Institute
The Children’s Hospital at Westmead
Sydney, NSW, Australia
Frits Beemer, M.D.
Department of Medical Genetics
University Medical Centre, Utrecht, The Netherlands
Robert Beecher, M.S.
Children's Hospital of Wisconsin, Milwaukee, WI, USA
Margaret N. Berry, M.S.
Dept, of Pediatrics, Section on Medical Genetics
Wake Forest University, Winston-Salem, NC, USA
J. Booij, Dept. of Nuclear Medicine
Academic Medical Center, Amsterdam, The Netherlands
E. Boot, Dept. of Psychiatry, Academic Medical Center
Amsterdam, The Netherlands
Linda J. Campbell
Centre for Brain and Mental Health Research
University of Newcastle, Newcastle, NSW, Australia
Xavier Chitnis
Centre for Brain and Mental Health Research
University of Newcastle, Newcastle, NSW, Australia
Donna Cutler-Landsman, Madison, WI, USA
William Cutter
Centre for Brain and Mental Health Research
University of Newcastle, Newcastle, NSW, Australia
Eileen Daly
Centre for Brain and Mental Health Research
University of Newcastle, Newcastle, NSW, Australia
Martin Debbané
University of Geneva, Geneva, Switzerland
L. de Haan, Dept. of Psychiatry
Academic Medical Center, Amsterdam, The Netherlands
Henriëtte de Veye, Ph.D.
Dept. of Pediatric Psychology, University Medical Centre
Utrecht, The Netherlands
David Dossetor
Children’s Hospital Education Research Institute
The Children’s Hospital at Westmead
Sydney, NSW, Australia
Suzi Drevensek
University of Sydney
Sydney, NSW, Australia
Sasja N. Duijff, M.Sc., Dept. of Pediatric Psychology
University Medical Centre, Utrecht, The Netherlands
Professeur Stephan Eliez
Faculty of Medicine , University of Geneva
Geneva, Switzerland
Bronwyn Glaser
University of Geneva, Geneva, Switzerland
Karen J. Golding-Kushner, Ph.D.
Executive Director, VCFSEF
Private Practice in Speech-Language Pathology
East Brunswick, NJ, USA
Doron Gothelf, M.D.
Behavioral Neurogenetics Center
Schneider Children's Medical Center
Petah Tiqva, Israel
Honey Heussler, M.D.
Mater Children’s Hospital
Brisbane, Qld, Australia
Anne Marie Higgins, R.N., F.N.P., M.A.
Clinical and Research Coordinator
VCFS Center, Upstate Medical University
Syracuse, NY, USA
Matcheri S. Keshavan, M.D.
Dept. of Psychiatry, Wayne State University
Detroit, MI, USA
Petra W.J. Klaassen, M.Sc.
Department of Pediatric Psychology
University Medical Centre, Utrecht, The Netherlands
Thomas R. Kwapil, Ph.D.
University of North Carolina at Greensboro
Greensboro, NC, USA
Eve Lewandowski, M.S.
Dept. of Psychology
University of North Carolina at Greensboro
Greensboro, NC, USA
D. Linszen, Dept. of Psychiatry
Academic Medical Center, Amsterdam, The Netherlands
Abraham Lipton, Research Assistant
VCFS Center, Upstate Medical University
Syracuse, NY, USA
Sandra Martinez
University of Geneva, Geneva, Switzerland
Lea Matasci
University of Geneva, Geneva, Switzerland
Kazuo Momma, M.D.
Professor, Department of Pediatric Cardiology
Tokyo Women’s Medical University
Tokyo, Japan
Robin Morris
King’s College London, Institute of Psychiatry, UK
Declan Murphy
King’s College London, Institute of Psychiatry, UK
Kieran Murphy
Royal College of Surgeons, Dublin, Ireland
Ryan Murray, Service Médico-Pédagogique
Faculté de Médecine de L'Université de Genève
Genève, Switzerland
Roopa Nagarajan, M.S., M.Sc.
Professor & Chairperson, Dept. of Speech and Hearing
Sri Ramachandra Medical College and Research Institute
Chennai, India
Neil Nicoll
Children’s Hospital Education Research Institute
The Children’s Hospital at Westmead
Sydney, NSW, Australia
Jeffrey J. Nutche, Dept. of Psychiatry
University of Pittsburgh School of Medicine
Pittsburgh, PA, USA
Stephen Russell, President, VCFSEF
Brisbane, Queensland, Australia
Marie Schaer, University of Geneva
Geneva, Switzerland
Vandana Shashi, M.D.
Dept. of Pediatrics, Section of Medical Genetics
Wake Forest University School of Medicine
Winston-Salem, NC, USA
Robert J. Shprintzen, Ph.D.
Robert J. Shprintzen, Ph.D.
Director, VCFS Center
Professor or Otolaryngology and Pediatrics
Upstate Medical University, Syracuse, NY, USA
Monique Sijmens, M.Sc.
Department of Child and Adolescent Psychiatry
University Medical Centre, Utrecht, The Netherlands
Tony Simon, Ph.D.
M.I.N.D. Institute, University of California, Davis
Sacramento, CA, USA
Angela F. Stevens
Centre for Brain and Mental Health Research
University of Newcastle, Newcastle, NSW, Australia
Raymond Tanner, Aberfoyle Park, South Australia
Sherard A. Tatum III, M.D.
Department of Otolaryngology
Upstate Medical University
Syracuse, NY, USA
Tiong Tan, M.D.
Genetic Health Services Victoria
Melbourne, Vic, Australia
Therese van Amelsvoort, M.D., Ph.D.
Department of Psychiatry, Academic Medical Center
Amsterdam, The Netherlands
Susan van der Berg
Children’s Hospital Education Research Institute
The Children’s Hospital at Westmead
Sydney, NSW, Australia
Jacob A.S. Vorstman, M.D.
University Medical Centre
Rudolf Magnus Institute of Neurosciences
Sharon Watt
Children’s Hospital Education Research Institute
The Children’s Hospital at Westmead
Sydney, NSW, Australia
Meredith Wilson
Children’s Hospital Education Research Institute
The Children’s Hospital at Westmead
Sydney, NSW, Australia
Peter Wilson, Solicitor
Bruce Thomas, Lawyers, Brisbane, Qld, Australia
J. Zinstock, Dept. of Psychiatry
Academic Medical Center, Amsterdam, The Netherlands
Arthur Shores
Children’s Hospital Education Research Institute
The Children’s Hospital at Westmead
_______________________________________________________________
July 7 - 9, 2006
12th International Scientific Meeting of the VCFS Educational Foundation Inc
_______________________________________________________________
October 31 - November 2, 2006
The VCFS Foundation (Qld) Inc. International Conference 2002
This Conference was held at the Royal On the Park in Brisbane
on October 31 - November 2, 2002
Guest speakers included:
- Dr Robert Shprintzen - Professor of Otolaryngology and Professor of Pediatrics, Upstate Medical University, Syracuse, New York.
Velo Cardio Facial Syndrome was described by Dr Shprintzen in New York in 1978 based on his observations of the common features of the syndrome.
This is why it is also known as Shprintzen Syndrome.
- Dr Karen Golding-Kushner - Assistant Professor of Speech-Language Pathology, Kean University, Union, New Jersey.
- Dr Stephan Eliez - Division of Child & Adolescent Psychiatry - Geneva University School of Medicine, Geneva Switzerland.
Co-author of numerous articles in relation to MRI Brain research for VCFS patients.
His recent papers include
VCFS: Are Structural Changes - The Temporal and Mesial Temporal Regions Related to Schizophrenia? (Eliez et al AMJ Psychiatry 158: 447-453)
and
Children and Adolescences with VCFS: A Volumetric MRI Study (Eliez et al AMJ Psychiatry 157: 407-415)
He is a celebrated speaker at many International Conferences.
- Ms Bronwyn Glaser, B.A. - Dr Eliez's Research Assistant - Geneva School of Medicine, Geneva Switzerland. (in 2002)
- Ms Donna Landsman - Educator, Madison Wisconsin, USA
- Ms Suzi Drevensek- Speech Pathologist, The University Of Sydney.
- Ms Sue Galletly- Educator and Speech Pathologist, North Queensland, Australia.
- Dr Tony Attwood - Clinical Psychologist; World recognised authority on Asperger's Syndrome and disorders in the autistic spectrum.
- Dr Richard Lewandowski - Plastic Surgeon, Brisbane, Australia
- Dr Hugh McCallum - Orthodontist - Royal Children's Hospital, Brisbane.
- Hans Peter Abel - Optometrist - Leading specialist in the world on eye problems with people with VCFS, Sydney.
- Ms Kate Bilbie - Speech Therapist - Mater Children's Hospital, Brisbane.
- Mrs Deidre Brandon - Remedial Teacher, Brisbane.
- Mr Raymond Tanner - Adult man with VCFS - Raymond has written a book about VCFS and people's experiences - Adelaide, Australia.
- Mr John Giles - Father of Brooke (VCFS)
The topics that were discussed:
Dr Robert Shprintzen - VCFS in the USA
Dr Robert Shprintzen - Why do Children with VCFS develop so distinctive a pattern of communication?
Ms Suzi Drevensek - The Australian Research Perspective: Feeding Problems in VCFS Babies
Ms Bronwyn Glaser - Language in Children with VCFS - The Language Profile as exposed by Functional Neuroimaging.
Hans Peter-Abel - An Optometrist's Experience with the treatment of VCFS Patients.
Dr Hugh McCallum - Orthodontic Anomalies and corrections in VCFS Patients.
Dr Robert Shprintzen - Evaluating velopharyngeal insufficiency in VCFS.
Dr Karen Golding-Kushner - Understanding and Treating Communication Disorders in VCFS
Ms Donna Landsman - Educational Needs of Children with VCFS.
Ms Sue Galletly - Understanding your Student's Learning Disability.
Dr Stephan Eliez - From Brain to Behaviour: the Contribution of Neuroimaging to VCFS Research.
Dr Tony Attwood - VCFS Behavioural Disabilities viewed as part of, and their relationship to, the Autistic Spectrum.
Dr Richard Lewandowski - Surgical Management of Velopharyngeal Insufficiency; General Observations on VCFS Surgical Management; the role of Plastic Surgery.
Dr Jim McGill - Genetics and VCFS - Understanding the Basic Building Blocks of Life.
Open Forum - including interaction with all speakers, short presentations from several guest speakers including Mr Raymond Tanner, Ms Kate Bilbie, Mrs Deidre Brandon and Mr John Giles.
All of the above topics were recorded onto audio tapes.
They may be purchased individually or as a set.
The cost per tape is $5.00 plus $2.00 postage.
The cost per set is $54. This includes postage.
Please email the VCFS Foundation Qld on mail@vcfs.com.au if you wish to order the audio tapes.
| NOVEMBER 2006 |
| JULY 2006 |
| NOVEMBER 2002 |
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