Disclaimer: This book was created after the 1998 Family Conference.  The articles are important to all of those involved with RTS.  This is online without permission from Dr. Rubinstein and the Cincinnatti Rubinstein-Taybi organization.  They would prefer that you call Dr. Rubinstein at  1-800-344-2462 ext. 4621 and request a copy of the book.  I would encourage everyone, especially those with a child who has RTS to call the above number and request a copy of this book.  I have been reassured by Mark Shannon that this book will be sent to anyone who requests it, regardless of country.
All the information from the book is not online (another reason to call and request the book).  Left out are articles which are copyrighted or are not appropriate for the web site (includes list of attendees).  All articles which are deemed “public domain” are included..
Diane Wardlow

The 1998 International Family Conference on Rubinstein-Taybi Syndrome

Mark Shannon, Conference Coordinator
University Affiliated Cincinnati Center for Developmental Disorders

Overview: The Westin Hotel Cincinnati served as the site of the 1998 International Family Conference on Rubinstein-Taybi Syndrome.  Hosted by the University Affiliated Cincinnati Center for Developmental Disorders (UACCDD) at Children’s Hospital Medical Center (CHMC) in Cincinnati, the event attracted more than 260 adults from eight countries.  Convened July 10-13, 1998 by Lorrie Baxter of the United States Rubinstein-Taybi Support Group and Dr. Jack H. Rubinstein, founder and former director of UACCDD, the Conference was an important forum for both families and professional caregivers to gain insights regarding the syndrome.  Rubinstein-Taybi syndrome (RTS) is a low incidence birth anomaly.  There are approximately 800 known cases of RTS in the world.

Dr. Rubinstein and members of the administrative staff of UACCDD spent over a year planning for the conference.  More than 50 physicians and professionals from UACCDD and Children’s Hospital in Cincinnati as well as experts from across the United States and Europe took part in the conference.

The conference goals were: 1) to share current “best practice” skills in the care of individuals with Rubinstein-Taybi syndrome; 2) to provide a forum for families and professionals to network with one another; and 3) to challenge the professional and research community to undertake efforts to increase the knowledge about the syndrome and improve the quality of life for persons with Rubinstein-Taybi syndrome.  To achieve those goals, the conference was planned to provide both a lecture series and an in-depth clinical/research component structured to address the unique circumstances of individual participants.

Mark Shannon, Conference Coordinator, and Dr. Sonya Oppenheimer, acting director of UACCDD, convened the conference and welcomed participants.  Lorrie Baxter, who maintains the support group for families in the USA and who is the mother of a 14 year old son with RTS, introduced Dr. Jack H. Rubinstein and Dr. Hooshang Taybi (the physicians for whom the syndrome is named).  They presented insights into the events surrounding the identification of the syndrome in the early 1960’s, the work in which they have been involved since, and their hopes for the future.

The Plenary Session consisted of an international panel of experts assembled to share what is currently known regarding the genetic implications of the syndrome.  From Children’s Hospital Medical Center in Cincinnati, Ruthann Blough, Ph.D. and Gregory Grabowski, M.D. presented information about local research and its implications for families and caregivers.  Dr. Raoul Hennekam and Dr. Fred Petrij provided insights and possible implications of research being conducted in Europe.  The purpose of the evening was to provide conference participants with an understanding of what is known of the genetic research on the syndrome.

The next day, participants selected from multiple offerings.  One option was a panel presentation of physicians reporting on the latest research findings and best practice care.  The panel represented disciplines including dentistry, opthalmology, dermatology, nutrition, cardiology, urology, nuerosurgery, orthopedics, otolaryngology, anesthesia, pulmonology, and others.  Conference attendees were encouraged to ask questions and share personal experiences.

Other options allowed conference attendees to attend presentations by professionals involved in non-medical arenas.  Participants had the opportunity to consider issues related to language acquisition, occupational therapy, the transition from adolescence to adulthood, planning for long-term housing needs, alternative therapies, and behavioral considerations.

On Saturday evening the more than 200 children in attendance were reunited with parents, conference volunteers, and panel members to share a meal overlooking historic Fountain Square in the heart of Cincinnati (see The Children). The Atrium was filled to capacity with the more than 500 guests assembled to celebrate this extraordinary international event.

Mr. Chris Garavente, founder of The Special Friends Foundation, presented Dr. Jack H. Rubinstein with a check reflecting the Foundation’s role as Major Sponsor of the 1998 Conference.  Mr. Garavente shared his experience as a parent of a child with Rubinstein-Taybi syndrome and his vision for the work of the Special Friends Foundation.  It is his hope that the Foundation will provide critical support to the research and medical community to better understand and treat the syndrome and direct assistance to families challenged with the financial burden of providing care for a child with a disability.

Following dinner, Loes Bosch-Soors d’Ancona and Vera Hees-Snijder related their experiences of parenting children with RTS and presented an overview of the work of the RTS Parent Group in the Netherlands.

Assisted by translators and electronic supports provided by the conference, families and professionals from eight countries, shared valuable information, and celebrated this unique opportunity to be together.

Clinical Evaluations:  A component of the 1998 International Family Conference on Rubinstein-Taybi Syndrome was the Clinical Evaluations series conducted on July 12-13, 1998.  These optional interdisciplinary evaluations were offered at no cost to conference participants.

There was a threefold purpose of the evaluations.  The first was to attempt to confirm a diagnosis of Rubinstein-Taybi syndrome.  RTS is a complex genetic anomaly that exhibits an array of characteristics.  In many cases, families struggle for years to establish a diagnosis.  The second purpose was to provide families and care givers an opportunity to connect with specialists and to discuss their individual concerns.  The third purpose was to collect data to be used as part of future research to improve the quality of life for individuals with RTS.

An Institutional Review Committee from the Medical Center evaluated the procedures to insure that medical and ethical standards were met.  Joan Earle Hahn, DNSc., RN and Shauna Larrick, MSN, CPNP of UACCDD’s Nursing Department collaborated with Dr. Jack H. Rubinstein, Dr. Nancy Lanphear, and Rose Ann Parrish, MSN to coordinate the disciplines involved.

Eighty-eight families elected to participate.  In advance, families were asked to assemble some basic information and provide results and reports of previous testing.  Each wa assigned an appointment time.  Transportation from the conference hotel to the medical center was provided.

Upon arrival families received an itinerary to route them through the clinical evaluation process.

Volunteers from national nursing organizations, CHMC, UACCDD and the community assisted.  The information gathered will be used to expand the current understanding of RTS.  New data may offer important insights to families and professionals charged with providing quality health care for individuals with Rubinstein-Taybi syndrome.

The Children: The 1998 International Family Conference on Rubinstein-Taybi Syndrome registered 210 children as part of the four day event.  The children represented both youngsters with Rubinstein-Taybi syndrome (RTS) and their siblings.  These special guests presented some interested challenges. 

There were routine safety issues, the typical concerns of young children being frightened by any separation from their parents, some dietary concerns, varied attention spans, needs for naps, needs for hugs and lots of interest in having fun.  Each had to be considered individually. In addition to the medical issues commonly associated with RTS there were language  barriers.  For most conferences sponsored by the University Affiliated Cincinnati Center for Developmental Disorders (UACCDD) a language barrier would suggest a language delay. However, for an international conference is also meant communicating with children utilizing multiple languages.

These needs are more were met by a core of volunteers assembled from UACCDD staff, Children’s Hospital Medical Center (CHMC) representatives of nursing groups from around the country, parents attending the conference, and local community members.

Children were assigned to groups according to their ages and developmental needs.  Activities included pizza parties, directed tours of the Cincinnati Zoo, visits to the Cincinnati Museum Center, arts and craft projects, story telling and watching lots of videos.

Mark Shannon, conference coordinator, reported, “at some point every conference planning committee struggles with the question of what to do with the children.  Should they be included?  Should they not be included?  The committee planning this conference was determined that the children be a part of this event.”  The goal of including the children meant keeping these young attendees safe and allowing them and their families to enjoy their stay in Cincinnati.  However, many parents spoke of how exciting it was to see so many children with RTS.  Most reported that they had never had the opportunity to observe children with RTS at various stages of development.  It proved to be a powerful learning experience for many of the parents and caregivers.  Ultimately, the presence of the children was one of the factors that made the 1998 International Family Conference on Rubinstein-Taybi Syndrome so exciting and such an enormous success.  According to one presenter, “The kids are what kept us honest - it was impossible to lose our focus.”

The Sharing of Gifts: Dr. Hooshang Taybi, one of the physician for whom the RTS syndrome is named, prepared gifts for everyone involved with the Conference.  For each family in attendance Dr. Taybi designed and stitched a conference tote bag, for conference presenters a cushion for their desk chairs was created.  For Dr. Rubinstein and conference staff monogrammed letter openers were forged.  Dr. Taybi presented Mrs. Baxter of the RTS U.S. Parent Group with a necklace that he created specially for her.

Each of these gifts was unique and thoughtful.  They represented an enormous effort made to insure that every participant was welcomed and appreciated.  Many thanks to Dr. Taybi.

Generous gestures such as the exchange of gifts helped to make The 1998 International Family Conference on Rubinstein-Taybi Syndrome an event where old acquaintances could be renewed and new friendships could be made.  For those few days, hundreds of individuals from around the world came together to share their best hopes, expertise, and resources.

Those gifts continue to be shared....

Replication:
This information is in the public domain unless otherwise indicated.  Readers are encouraged to copy and share it, but please credit The Proceedings for the 1998 International Family Conference on Rubinstein-Taybi Syndrome.

Funding:
UACCDD receives major support from the Hamilton County Mental Retardation Service Levy.  Additional funding sources include: United Way and Community Chest; Maternal and Child Health Bureau and the Administration on Developmental Disabilities of the Department of Health and Human Services; other county, state, and federal agencies; foundations; and individual contributions.
The 1998 International Family Conference on Rubinstein-Taybi Syndrome is very grateful for the generous support of The Special Friends Foundation.

This document was added to the Rubinstein-Taybi web site in November 2000.

If any of the information found on this website does not adhere to copyright laws it is unintentional, please contact dwardlow@uswest.net and it will be removed from the site.

http://www.rubinstein-taybi.org