Sharing Knowledge, Increasing Hope

Dreaming New Dreams

 

The Opitz Trigonocephaly Syndrome Family Network Conference

June 15-18, 2006

DoubleTree Guest Suites & Conference Center

Downers Grove, Illinois

 

 

 

 

 

 

 

 

 

 

Sharing Knowledge, Increasing Hope

Dreaming New Dreams

 

 

 

 

The Opitz Trigonocephaly Syndrome Family Network, Inc. cordially invites you and your family to join us for a weekend of education, fellowship and fun!

 

 

Come and hear about the latest news on the syndrome, meet new friends and re-connect with old friends.

 

 

WHEN: Thursday June 15 – Saturday June 17, 2006

 

 

WHERE: Doubletree Guest Suites and Conference Center

Downers Grove, IL

 

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. ALERT: Book your room ASAP as only 30 rooms are reserved and we are almost full.

Registration Fee: $100.00 per adult (this fee should not deter anyone from attending so is optional. However, any donation to offset hotel and meal costs is very much appreciated)

 

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.

 

Limo Reservations - Victory Limo 1-708-450-3501

 

Limo reservations from the airport must be made one week prior to arrival. It will cost approximately $30 from O'Hare to the Doubletree Guest Suites in Downers Grove. You need to make the reservation the week before and tell the company the flight and arrival time. Once you collect your luggage, call the company and the limo will meet you at the baggage claim curb within five minutes. The company will explain all of that when you call. A taxi would be approximately $60.

For international families, e-mail Karen with the flight information and she will call and make the reservation. E-mail Karen kdot62@comcast.net by June 7 then she will call Victory with the family name and flight information.

 

 

 

 

Conference Agenda

 

Thursday, June 15

 

4:00 – 8:00 p.m.

Hospitality Suite 205

Registration and Welcome

Light meal available

Friday clinic registration

 

Friday, June 16

 

8:00 – 8:30

Continental Breakfast (included) Maple/Oak/Sycamore

Children settled in Cypress/Elm/Hawthorne

Kids activities include music, puppet making and puppet

shows, movies, magic and more!

 

8:30 – 8:45

Welcome!

Dr. Opitz and Karen, Meg and Leslie

Maple/Oak/Sycamore

 

8:45 – 9:00

Introduction of speaker, Deborah Gough, and overview of day’s

activities and structure

 

9:00 – 12:00

Clinic for nine families

Genetic clinics - one hour per family

Suites 207 & 209

 

9:00 – 10:30

Speaker – Deborah Gough

Maple/Oak/Sycamore

 

 

10:30 – 10:45

Break

 

10:45 – 12:00

Deborah Gough (con’t)

 

12:00 – 1:00

Lunch buffet in atrium for all (included)

 

1:00 – 5:00

Clinics continue (12 families)

Suites 207 & 209

 

1:00 – 1:15

Settle children in afternoon activities

Cyprus/Elm/Hawthorne

 

1:15 – 2:30

Deborah Gough (con’t)

 

2:30 – 2:45

Break

 

2:45 – 5:00

Deborah Gough (conclusion)

 

6:00 – 8:00

Pizza party at COACH http://www.coachcarecenter.org/coachcarecenter/DesktopDefault.aspx?tabindex=1&tabid=607 Bus departs hotel at 6 p.m. and returns at 8 p.m.

 

Saturday, June 17

 

8:00 – 9:00

Continental Breakfast (included) Maple/Oak/Sycamore

 

8:30 – 9:00

Settle children in Cyprus/Elm/Hawthorne

Art will come alive as our kids create life size replicas of themselves. What better way to celebrate our uniqueness than to create a self-portrait of all that makes us special? We’ll need all hands on deck this morning as mother and daughter team, Marlene and Suzanne Scott lead the kids, with the able bodied assistance of the older kids (please!) in fun, messy and meaningful art activities.

 

 

 

9:00 – 11:00

What’s it all mean and where do we go from here?

Q & A with the geneticists (Maple/Oak/Sycamore)

 

11:00 – 11:15

Break

 

11:15 – 12:00

Wrap up from the morning

 

12:00

Pick up and clean up our kids

 

12:00 – 1:00

Lunch buffet in Atrium for all (included)

Afternoon group family activity to Morton Arboretum http://www.mortonarb.org/ Bus departs hotel at 2:30 and returns at 5:30 p.m.

 

Dinner on own

 

 

The conference is formally over at this point. Families are encouraged to visit Chicago. The hotel shuttle can bring families to the Downer’s Grove train station and it is half hour ride to downtown Chicago on the train. Some families may chose to hang out and continue networking with other families and others may decide to head home and celebrate Father’s Day!

 

Deborah L. Gough, Ed.D., is an associate professor at Northern Illinois University. She is on the faculty of the graduate training program in Rehabilitation Counseling, within the Department of Communicative Disorders. Dr. Gough earned her M.A. degree in rehabilitation counseling and a doctorate in counseling. Dr. Gough has trained extensively in the area of loss and grieving related to disability issues. Dr. Gough provides training on disability as an issue of loss, grieving, and personal growth to rehabilitation and education professionals and consumers/family members on both state and national levels. She has facilitated therapy groups for individuals with hearing loss, addressing personal impacts and feelings about their challenges.

Dr. Gough also facilitates groups for parents of children with autism and other disabilities. On a more personal note, Dr. Gough is the parent of a young son with autism who has taught her valuable lessons in disability, grieving, and growth.

 

John Marius Opitz, M.D. is a physician and researcher of international stature, with a career spanning more than thirty years. He was born in Germany in 1935 and moved to the USA in 1950. He studied medicine at the University of Iowa and graduated in 1959. After training in pediatrics he obtained special experience in clinical genetics with the pediatrician and dysmorphologist David W. Smith (1926-1981) and cytogenetics with the human geneticist Klaus Patau, who was also born in Germany.

Dr. Opitz is currently with the Primary Children's Medical Center Salt Lake City, concentrating on clinical genetics, especially those genetic factors influencing mental retardation, abnormalities of sex determination and sex differentiation, and skeletal dysplasias. Apart from his medical activities he is interested in natural history and the history of biology and music.

 

William Dobyns, M.D. is medical director of the Department of Human Genetics, University of Chicago and is internationally recognized as an expert in the diagnosis of lissencephaly and other cortical malformations. Dr. Dobyns continues to vigorously pursue his research interests while directing an active clinical service within the University of Chicago Children's Hospital. His clinical responsibilities include attending Genetics, Neurogenetics and Craniofacial/Cleft Lip & Palate Clinics as well as providing a genetics consultation service for patients within UC hospitals. Dr. Dobyns is Board Certified in Medical Genetics and Neurology.

 

Darrel Waggoner, M.D. is assistant professor with the departments of pediatrics and genetics at the University of Chicago. Dr. Waggoner is actively involved in the clinical activities within the Human Genetics Department and the Department of Pediatrics as well as co-director of the Pritzker School of Medicine Genetics training. His clinical responsibilities include attending Genetics and Cranio-Facial/Cleft Lip & Palate Clinics as well as providing care for metabolic diseases and genetics consultation service for patients within UC hospitals.  He also serves as a clinical consultant for the University of Chicago Genetic Services laboratories.  Dr. Waggoner is Board Certified in Medical Genetics and Pediatrics.

 

Norio Niikawa, M.D. qualified in medicine at Hokkaido University in 1967. From 1968 to 1971 he trained in pediatrics at the Hokkaido University Hospital. From 1972 to 1975 he worked in the embryology and cytogenetics laboratory at the Department of Gynecology and Obstetrics in the Cantonal Hospital, Geneva, Switzerland. He subsequently worked as an instructor of pediatrics at Hokkaido University School of Medicine from 1976 to 1984, and received his PhD in 1979. From 1984 he has been Professor and Chairman of Human Genetics at Nagasaki University School of Medicine.

Dr. Niikawa is an associate editor of the American Journal of Medical Genetics, Journal of Human Genetics, and a board member of the Korean Society of Medical Genetics’ Journal of Genetic Medicine.

 

Dr. Niikawa sent the following communication to Dr. Opitz in January 2006:

 

I am sending this mail from Geneva, Switzerland.  We, the
CREST research team, have isolated a candidate gene
causative for the C syndrome from a breakpoint of a
translocation in a Japanese patient with the syndrome.
The nature of the novel gene isolated may explain the
clinical manifestations of the syndrome.  As our work has
not been published, we apologize not to mention here about
its name, but we wish to present the details of our work
in the conference.  We, Dr. Narotomi, Dr. Naname and I
will participate in the conference. 

Best wishes, Norio Niikawa, MD, PhD  

 

 

Also joining us at the conference will be Dr. Helga Toriello, who is director of Perinatal Genetics with the University of Michigan Genetics Services. Dr. Helga Toriello is a well-known and respected human geneticist who is very interested in the Opitz C Syndrome.

 

 

 

 

 

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Registration form

 

The registration fee should be made payable to:

OTS Family Network and sent to:

OTS Family Network Inc., 1720 Hudson St., Denver CO 80220

Overall conference costs include hotel food and meeting space, speaker fees, geneticists' travel and hotel costs, and children's activities and supplies.

Name: _________________________________________________

Address: _______________________________________________

City: _____________________ State: _________________

Zip Code: __________ Country: ___________________________

Email: ____________________________

Telephone: ______________________________

 

Please print names of all family members/guests attending:

 

1.     ________________________________________________________

 

 

2.     ________________________________________________________

 

 

3.     ________________________________________________________

 

 

4.     ________________________________________________________

 

 

5.     ________________________________________________________

 

 

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7.     ________________________________________________________

 

 

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