Friday, July 21, 2000

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

Karen Ruckman

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

Panel Session

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

      1. Common Cardiac Abnormalities in VCFS; Elizabeth Welch, M.D.
      2. Noninvasive Techniques in the Management of Common Heart Abnormalities in VCFS; Evan Zahn, M.D.
      3. 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.