7th Annual Meeting
The Velo-Cardio-Facial Syndrome Educational Foundation, Inc.
Deerfield Beach/Boca Raton, Florida
July 20-22, 2001
Friday, July 20th, 2001 (kick-off)
12:00 noon: Registration
12:30 P.M.: Introductory remarks
Robert J. Shprintzen, Ph.D., Executive Director
Barbara Dandron, President
1:00 P.M. Velo-Cardio-Facial Syndrome, Congenital Heart Disease, and Asthma: A Prospective Study
Michael J. Ackerman, M.D., Ph.D.; Arlene VanGalder, R.N.; Mark E. Wylam, M.D.; Robert H. Feldt, M.D.; Coburn J. Porter, M.D.; Gordon Dewald, Ph.D.; Paul D. Scanlon, M.D.; David J. Driscoll, M.D.
1:30 P.M. Vasomotor Instability in VCFS: Implications for Surgical Correction of Congenital Heart Disease.
Vandana Shashi, Wake Forest University Baptist Medical Center, Winston-Salem, NC
1:50 P.M. Questions and Discussion
2:00 P.M. Speech Therapy in VCFS: A Model for Professionals to Follow
Karen J. Golding-Kushner, Ph.D., Kean University, Union, NJ.
2:45 P.M. Speech Therapy at Home: A Mother’s Personal Experience
Amy McDonald, Lake Orion, MI
3:05 P.M. Questions and Discussion
3:15 P.M. Coffee
4:05 P.M. A Three-Year Prospective Study of Leg Pains in VCFS
Ahmad Al-Khattat, Nene College, Northampton, United Kingdom
4:35 P.M. Immunizations in the Child with VCFS Behavior
Anne Marie Higgins, N.P., R.N., Upstate Medical University, Syracuse, NY
4:50 P.M. Questions and Discussion
5:00 P.M. Business Meeting
6:30 P.M. Annual Dinner
Saturday Morning, July 21st, 2001
8:30 A.M. Registration and Continental Breakfast
9:00 A.M. Modeling the complex and variable VCFS phenotype in the mouse.
Elizabeth A. Lindsay, Ph.D., Baylor College of Medicine, Houston, TX
9:35 A.M. Tbx1 function(s) in congenital heart and vascular disease
Antonio Baldini, M.D., Baylor College of Medicine, Houston, TX
10:10 A.M. Gene dosage and genomic disorders on chromosome 22q11
Bernice Morrow, Ph.D., Albert Einstein College of Medicine, Bronx, NY
10:45 A.M. Coffee
11:00 A.M. Can Tbx1 Account for the Spectrum of Anomalies in VCFS?
Robert J. Shprintzen, Ph.D., Upstate Medical University, Syracuse, NY
11:35 A.M. Questions and Panel Discussion: The Interface Between Molecular Genetics and Clinical Findings In VCFS
Antonio Baldini, Elizabeth Lindsay, Bernice Morrow, Robert Shprintzen, Vandana Shashi
12:00 P.M. Lunch
Saturday Afternoon, July 21, 2001
2:00 P.M. Brain Changes and Intellectual Function in Velo-Cardio-Facial Syndrome
Wendy R. Kates, Ph.D.; Courtney Burnette; Leslie Abbott; Walter E. Kaufmann; Godfrey Pearlson; Johns Hopkins University School of Medicine, Baltimore, MD.
2:30 P.M. Educational Goals in VCFS
Donna Landsman, M.S., Madison, WI
3:15 P.M. Advocacy for the Child with VCFS
Nadine O. Vogel, MBA, Founder and Director, S.N.A.P. (Special Needs Advocate for Parents)
4:00 P.M. Questions and Discussion
4:15 P.M. Coffee
4:30 P.M. A Concert from the Heart
Sunday, July 22, 2001
9:00 A.M. Establishing and Maintaining Support Groups for VCFS
Maureen Anderson, Salem, NH, NE Support Grp
9:30 A.M. The List: Using the Internet Wisely
10:00 A.M. Surgery for Speech: Goals and Outcomes
Sherard A. Tatum, III, Upstate Medical University, Syracuse, NY
10:30 A.M. Questions and Discussion
10:45 A.M. Coffee
11:00 A.M. Pediatric Cardiology and VCFS: A Panel from Miami Children’s Hospital
- Common Cardiac Abnormalities in VCFS; Elizabeth Welch, M.D.
- Noninvasive Techniques in the Management of Common Heart Abnormalities in VCFS; Evan Zahn, M.D.
- Surgical Management and a Team Approach to Complicated Cardiac Defects in VCFS; Redmond P. Burke, M.D.
12:00 Noon Adjourn
Concurrent Clinics –
Speech Clinics and Leg Pain Clinics will be held throughout the course of the meeting. The speech clinics will be staffed by Karen J. Golding-Kushner, Robert J. Shprintzen, Eileen Marrinan, Susan Marks, and Robert Beecher. The Leg Pain Clinic will be staffed by Ahmad Al-Khattat and Stewart Goldman.