Mark Your Calendars!
Opitz Trigonocephaly (Opitz C) Syndrome
Family Conference
June 15-18, 2006
Chicago, Ill., USA
What:
A three day conference intended to provide support and information to families and caregivers worldwide who are parenting or have parented children diagnosed with Opitz C syndrome. All families and interested caregivers are encouraged to attend. Most important to families are meetings and clinics with Dr. Opitz and other geneticists familiar with Opitz C. University of Chicago geneticists Dr. William Dobyns and Dr. Darrel Waggoner will be partnering with Dr. Opitz to provide individual opportunities to meet with each child or adult/child and his family. NEW! A team of geneticists from Japan, led by Dr. Norio Niikawa, plans to attend the conference to present details of its research in isolating a gene that causes Opitz C. Dr. Niikawa is chairman of human genetics at Nagasaki University School of Medicine, an associate editor of the American Journal of Medical Genetics and a board member of the Korean Society of Medical Genetics Journal of Genetic Medicine. Also planning to join us at the conference is Dr. Helga Toriello, professor of pediatrics and human development at Michigan State University. Dr. Toriello is a well-known and respected human geneticist who is very interested in Opitz C Syndrome.
Support groups and information sharing among families as well as fun social activities will also be part of the activities! Preview the agenda here.
Where:
All sessions and lodging will be at the Doubletree Guest Suites and Conference Center in Downers Grove, a suburb west of Chicago. This hotel is convenient to O’Hare International Airport. To reserve a suite, families should call 1-800-222-TREE or go online at http://emarketing360.com/Doubletree/IL/DTDG. Remember to mention the Opitz C conference. Reservations must be made by May 25 to receive the conference rate of $99 per night. A suite can accommodate a family of five.
When:
Registration will be in the hospitality suite Thursday evening, June 15, from 4 p.m. to 8 p.m. The genetics clinic will be Friday with parent sessions running concurrently. Childcare will be provided in the same hotel and all sorts of fun activities are planned for our kids.
Further Information:
This conference is being planned far in advance to allow the many families worldwide to plan financially.
NEW! Opitz Trigonocophaly Syndrome Family Network Inc. has been incorporated as a nonprofit in Colorado and has been approved by the IRS as a 501(c)(3). That means we can accept tax-deductible contributions. Donations may be sent to OTS Family Network Inc., 1720 Hudson St., Denver CO 80220. We have set up an account at Key Bank in Denver.
Because families have varied financial resources and many are traveling from great distances, there is no minimum registration fee. Breakfast and lunch on Friday and Saturday are included in your registration. However, families are encouraged to pay a $100-per-adult conference registration fee to help offset these food costs. Families in a position to make a greater contribution may send a tax-deductible contribution to the above address. The registration fee should be made out to OTS Family Network and sent to the above address. Overall conference costs include hotel food and meeting space, speaker fees, geneticists' travel and hotel costs, and children's activities and supplies.
If families have cranial information from their child's infancy, such as baby pictures, MRIs, CT-SCANs or X-rays, please bring them to the conference for the geneticists to review during clinics.
For a registration form, please contact Meg Steimle at msteimle@wi.rr.com or msteimle@chw.org
Look for more news on the Opitz C family listserv, or if you are interested in assisting with conference planning or for more information please e-mail:
Karen & Jeff Roberts (Denver, CO) at kdot62@comcast.net
Leslie Gould (Joliet, IL) at skoolgal20@aol.com
or Meg & Mark Steimle (Milwaukee, WI) at msteimle@wi.rr.com or at msteimle@chw.org