VCFSEF Pre-Registration Form

6th Annual Conference
Velo-Cardio-Facial Syndrome Educational
Best Western Hotel and Conference Center
Baltimore, Maryland
July 21-23, 2000

The Program
Updated on 6/13/00 **

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.

Detailed agenda available from this link.

The program for the 6th Annual Meeting of the Velo-Cardio-Facial Syndrome Educational Foundation, Inc. has been released. In evaluating the requests of the membership of the Foundation — now over 1500 strong — we have included a variety of presentations, discussions, and clinics to cover all ages of individuals affected with VCFS. The international faculty consists of esteemed scientists and clinicians with both long and extensive experience with VCFS, including many of the most important contributions to the scientific literature on the disorder.

Opening the session will be a presentation by the Executive Director, Dr. Shprintzen, titled From 1975 to 2000: What Progress Have We Made in Treating VCFS From Infancy to Adulthood?

Returning to the meeting will be several presenters from previous years, who have presented cutting edge research that was only possible through the collaboration and cooperation provided by members of the Foundation, including:

  • Dr. Stephan Eliez, Department of Psychiatry, Stanford University School of Medicine (Functional Magnetic Resonance Imaging of the Brain in VCFS)
  • Dr. Bernice Morrow, Department of Molecular Genetics, Albert Einstein College of Medicine (Molecular Genetics: Of Mice and Men)
  • Donna Landsman (Educating the Child and Adolescent with VCFS) and
  • Dr. Ahmad Al-Khattat, Nene College, Northampton, England (Treating Chronic Leg Pains in VCFS: A 3 Year Follow-up).
  • Dr. Demitri Papolos**, recent author of The Bipolar Child, returns to discuss the psychiatric issues of VCFS.

There will be a special emphasis on resolving the communicative impairment associated with VCFS. Of special note is the speech clinic to be held for several days where acknowledged experts in treating children with VCFS will evaluate as many cases as possible, and demonstrate techniques for speech therapy. Among the experts participating will be:

  • Karen Golding-Kushner, Ph.D. (East Brunswick, NJ)
  • Robert Shprintzen, Ph.D. (Upstate Medical University, Syracuse, NY)
  • Natalie Havkin, M.S. (Upstate Medical University, Syracuse, NY)
  • Eileen Marrinan, M.S. (Boston, MA), and
  • Susan Marks, M.S. (Children�s Hospital of Wisconsin, Milwaukee).

This assembly of clinicians represents the broadest experience with VCFS possible with a collective experience of thousands of patients and many scientific publications.

Two presentations on speech will also be on the program: Speech Therapy In VCFS: A Model for Professionals to Follow (Karen J. Golding-Kushner, Ph.D.) and Speech Therapy In VCFS: A Model for Parents to Follow (Natalie Havkin, M.S.).  These will be practical sessions outlining treatment plans for individuals of all ages.

Also related to speech production, Dr. Scott Tatum of the Upstate Medical University will present data on his extensive experience with the surgical correction of hypernasal speech in VCFS (Surgery for Speech: Special Considerations and Outcomes in VCFS).

New to the program this year is Doron Gothelf, M.D., of Israel. Dr. Gothelf is an adult and child psychiatrist at Geha Psychiatric Hospital, and assistant professor at the Department of Psychiatry at the Sackler School of Medicine, Tel Aviv. His research work focuses on molecular biology of schizophrenia and the association between schizophrenia and VCFS.

Two special sessions from local faculty members will highlight the dynamics of family life and some strategies for building self-esteem. Dr. John Walkup, Division of Child and Adolescent Psychiatry at Johns Hopkins, will address self-esteem and strategies for avoiding conflict at home (Fostering Self Esteem in Your Child and Conflict Prevention in the Home).  A Sibshop will address the issue of how brothers and sisters react to their sibs with special needs (Addison Beck, Child Life Specialist, Mt. Washington Pediatric Hospital). Additionally, Nadine O. Vogel, MBA, Founder and Director of S.N.A.P. (Special Needs Advocate for Parents) will discuss mechanisms for providing for the welfare of children with VCFS once they reach adulthood (Planning for the Future of your Special Needs Child).

A new video production by Pam Holland and John Ackourney is on the program.  Those who attended last year�s meeting will recall the excellent video presented in Milwaukee.

NEW ! ! ! added 4/17/99

There are actually (3) different workshop taking place.

  1. Sibshop — mentioned above — for the brothers and sisters of children with VCFS (flyer enclosed). This event is scheduled for Saturday morning 7/22, from 10:00 a.m. to 2:00 p.m. The SibShop will be run by a certified and trained child life specialist, and will encourage friendships among the siblings through games and activities and encourage coping strategies of how to deal with the concerns of having a brother or sister with special needs. Sponsored by Julie Cooper and the Mid-Atlantic Support Group. There is NO CHARGE for this event.
  2. For children with VCFS, there will be a 4 hour self-esteem workshop. This event will take place at the same time as the Sibshop, and will help promote the children’s’ self-confidence through focusing on the positive, through games and encouraging bonding and acceptance among other VCFS children. There is NO CHARGE for this event.
  3. After the self-esteem workshop — also for children with VCFS — for a small fee, there will be a class on social skills and etiquette, conducted by Cathy Hanson, CO-Director of the International School of Protocol.. This class will focus on improvement with communication such as listening and speaking skills, body language and cues, maintaining eye contact, handshaking, telephone skills, and how to introduce yourself when meeting someone new. There is now NO charge for this event ( previously was $15.00).

The Call for Papers and presentations is still open until May 1st. Both scientific and lay presentations are expected, as well as several more additions to the program.  The Leg Pain Clinic held by Dr. Al-Khattat, also returns to this year’s meeting.

ALL THIS – – including the clinics, daily continental breakfasts, and afternoon refreshments – – is available for only $50 (single registration), $70 for a family of 2, or $80 for 3 or more family members (see the preregistration form in this issue) and, the optional Friday night dinner is only $30 per person.

Lastly, a few scholarships covering meeting registration and the dinner, are still available by written request to the Foundation Office. See contact information below.

For additional information, contact the Foundation office by:
– Phone: 315-464-6590
– Fax: 315-464-5321
– Email: [email protected] (new email address)

See you in Baltimore !!!