Friday, July 21, 2000

6th Annual Meeting
The Velo-Cardio-Facial Syndrome Educational Foundation, Inc.
Baltimore, Maryland
July 21-23, 2000


This CME event is also co-sponsored by the Office of Continuing Medical Education, SUNY Upstate Medical University at Syracuse. The State University of New York Upstate Medical University is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.

The State University of New York Upstate Medical University at Syracuse designates this continuing medical education activity for 13 credit hours in Category 1 of the Physician’s Recognition Award of the American Medical Association.

Friday, July 21, 2000

12:00 noon: Registration

12:30 P.M.: Introductory remarks; Robert J. Shprintzen, Ph.D., Executive Director; Julie Cooper, R.N., President

1:00 P.M. From 1975 to 2000: What Progress Have We Made in Treating VCFS -From Infancy to Adulthood

Robert J. Shprintzen, Ph.D., Upstate Medical University, Syracuse, NY

1:35 P.M. Questions and Discussion

1:45 P.M. Speech Therapy in VCFS: A Model for Professionals to Follow


Karen J. Golding-Kushner, Ph.D., East Brunswick, NJ.

2:30 P.M. Speech Therapy In VCFS: A Model for Parents to Follow


Natalie Havkin, M.S., Upstate Medical University, Syracuse, NY.

3:00 P.M. Questions and Discussion

3:15 P.M. Coffee

4:05 P.M. Fostering Self Esteem in Children and Conflict Prevention in the Home


Dr. John Walkup, Division of Child and Adolescent Psychiatry, Johns Hopkins

4:35 P.M. Questions and Discussion

4:45 P.M. Multiple Objective Input Therapy: A Model for Addressing Several Aspects of Communicative Behavior

A. Harding-Bell, Addenbrookes Hospital, Cambridge, United Kingdom

5:00 P.M. Business Meeting

6:30 P.M. Annual Dinner

 

 

Saturday, July 22, 2000

8:30 A.M. Registration and Continental Breakfast

9:00 A.M. Molecular Genetics: Of Mice and Men


Bernice Morrow, Ph.D., Albert Einstein College of Medicine, Bronx, NY

9:35 A.M. Questions and Discussion

9:45 A.M. Functional Magnetic Resonance Imaging of the Brain in VCFS: An Update.


Stephan Eliez, M.D., Stanford University School of Medicine, Stanford, CA

10:30 A.M. Questions and Discussion

10:45 A.M. Coffee

11:05 A.M. Early Treatment Leading to Medical Dependence: Keeping it Simple


Robert J. Shprintzen, Ph.D., Upstate Medical University, Syracuse, NY

11:35 A.M. Questions and Discussion

11:45 A.M. Planning for the Future of your Special Needs Child




Nadine O. Vogel, MBA, Founder and Director, S.N.A.P. (Special Needs Advocate for Parents)

12:30 P.M. Lunch

2:00 P.M. Psychiatric Manifestations in VCFS




Demitri Papolos, M.D., Albert Einstein Coll. of Medicine, Bronx, NY; Doron Gothelf, M.D., Geha Psychiatric Hospital, Sackler School of Medicine, Tel Aviv, Israel.

3:00 P.M. Panel Discussion and Questions on Psychiatric Manifestations in VCFS




Stephan Eliez, M.D., Stanford University School of Medicine, Stanford, CA; Doron Gothelf, M.D., Geha Psychiatric Hospital, Sackler School of Medicine, Tel Aviv, Israel; Demitri Papolos, M.D., Albert Einstein College of Medicine, Bronx, NY

3:30 P.M. Treating Chronic Leg Pains in VCFS: A 3 Year Follow-up

Ahmad Al-Khattat, Nene College, Northampton, United Kingdom

4:00 P.M. Questions and Discussion

4:15 P.M. Coffee

4:30 P.M. Immune Disorders in VCFS

Coleen Cunningham, M.D., Upstate Medical University, Syracuse, NY

5:10 P.M. Growth Velocity and Adult Height in VCFS

Anne Marie Higgins, N.P., Upstate Medical University, Syracuse, NY

5:20 P.M. Questions and Discussion

Sunday, July 23, 2000

9:00 A.M. Educating the Child and Adolescent with VCFS

Donna Landsman, M.A., Madison, WI

9:40 A.M. Long-term Goals: Planning for the Individual with VCFS after School Age


Panel Session

10:00 A.M. Sharing the Good Times.

Barbara Dandron, Deerfield Beach, Florida

10:10 A.M. Questions and Discussion

10:20 A.M. Coffee

10:30 A.M. Surgery for Speech: Special Considerations and Outcomes in VCFS




Sherard A. Tatum III, M.D., Upstate Medical University, Syracuse, NY

11:00 A.M. What is a Good Outcome for Surgery to Improve Speech?




panel: Karen J. Golding-Kushner, Ph.D., East Brunswick, NJ; Eileen Marrinan, M.S., Boston, MA; Susan Marks, M.S., Children’s Hospital of Wisconsin, Milwaukee, WI; Natalie Havkin, M.S., Upstate Medical University, Syracuse, NY

11:30 A.M. VCFS and Nonverbal Learning Disability: A Not-So-Perfect Fit




Wendy R. Kates, C.P. Burnette, L. Abbott, M.B. Denckla, Kennedy-Krieger Institute and the Johns Hopkins University, Baltimore, MD

12:00 noon Video Tape: A Day in the Life of VCFS, Pam Holland and John Ackourey (20 minutes)

CONCURRENT SESSIONS: The Speech and Leg Pain Clinics will be held at various times throughout the three days of the meeting. There is limited enrollment for these clinics and we would therefore urge preregistration as early as possible. The sibshop and self-esteem workshops will be held on Saturday from 10 A.M. until 2 P.M. There are no charges for these clinics or workshops. Finally, there will be a class on etiquette and social skills following the Saturday workshops for which there will be a minimal charge. If you are interested in the social skills/etiquette class, we will forward additional information.

Speech Clinic

Karen J. Golding-Kushner (New Brunswick, NJ), Natalie Havkin (Syracuse, NY), Susan Marks (Milwaukee, WI), Eileen Marrinan (Boston, MA), Robert J. Shprintzen (Syracuse)

Leg Pain Clinic

Ahmad Al-Khattat (Northampton, UK)

Etiquette Class

Cathy Hanson

Self-Esteem Workshop

Sibshop: A Program for Brothers and Sisters of Children with Special Needs

Addison Beck, Child Life Specialist, Mt. Washington Pediatric Hospital