| 2008 Family Conference on Holoprosencephaly |
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Presented by
Families for HoPE, Inc.
and
The Kennedy Krieger Institute
Carter Center
for Brain Research in Holoprosencephaly
and Related Malformations
| |
July 11 and 12, 2008
(Pre-conference July 10, 2008)
The Marten House Hotel & Lilly Conference Center
1801 W. 86th Street, Indianapolis, Indiana
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Who should attend: Children with HPE, parents, family members, caregivers, nurses, therapists, and anyone interested in learning more about holoprosencephaly
Conference Overview
This 2nd Biennial Family Conference on Holoprosencephaly is designed to promote the exchange of information, research, and the experience of caring for patients with HPE between medical professionals, researchers, caregivers, and family members. This will be accomplished in three phases. The pre-conference day, Thursday, will offer families the opportunity for clinical evaluations and scientific data collection. Dinner and a balloon release will kick-off the conference activities. Educational sessions will begin on Friday with lecture-based sessions and will be continued on Saturday with hands-on workshops. Friday will also provide a chance for families to talk with equipment vendors about home equipment for their child's needs.
At its simplest, this conference allows each family the opportunity to meet and interact with other families similar to their own. Mothers can bond with other mothers; fathers connect with other fathers; siblings can make friends with other siblings and meet families that resemble their own family. For the children with HPE, this is an opportunity to go for a trip in the car that does not ultimately end with IVs and monitors attached to their bodies; it is a time for family, friendship, learning and fun!
Objectives of the Conference:
- Outline recent advances in the understanding of HPE
- Discuss the optimal clinical mangement of patients with HPE
- Provide for family networking and support
- Educate families on treatment options
- Expose families to therapeutic strategies
- Explore options for medical equipment to improve quality of life
Physician Speakers
Alexander Hoon Jr., MD, MPH, Medical Director, Carter Center for Research in Holoprosencephaly and Related Malformations and Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine at Kennedy Krieger Institute and an Associate Professor of Pediatrics at the Johns Hopkins University School of Medicine. Dr. Hoon specializes in the care of children with motor disorders and advanced neuroimaging research.
Eric Levey, MD, Associate Medical Director, Carter Center for Research in Holoprosencephaly and Related Malformations at Kennedy Krieger Institute and Associate Professor of Pediatrics at the Johns Hopkins University School of Medicine. Dr. Levey specializes in the medical care of children with severe developmental disabilities.
Max Muenke, MD, Chief, Medical Genetics Branch, National Institutes of Health. Dr. Muenke focuses on the genetics of normal and abnormal brain development. His two major areas of interest are the genetics of holoprosencephaly and attention deficit hyperactivity disorder, respectively.
Cindy Roesler, MS, CCC/SLP, Project Coordinator and Research Speech-Language Pathologist for the Carter Center for Neurocognitive Research at the Center for Molecular and Behavioral Neuroscience (CMBN) of Rutgers University. She specializes in developing techniques for assessment and intervention of children with severely delayed motor and speech development.
Schedule of Events
|
Thursday, July 10
8:00 am - 4:00 pm
6:00 pm
6:30 pm
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Clinical Evaluations by Appointment
Memorial Balloon Release
Pizza Party (swimming, games, Cornhole tournament)
| Location:
The Medical Genetics and Neurodevelopmental Center at Peyton Manning Children's Hospital
Poolside Courtyard
Poolside Ballroom
|
Friday, July 11
8:00 am
8:30 am - 12:30 pm
9:00 am - 10:45 am
10:45 am - 11:00 am
11:00 am - 12:30 pm
12:30 pm - 1:30 pm
1:30 pm - 5:00 pm
1:30 pm - 3:00 pm
3:00 pm - 3:15 pm
3:15 pm - 5:00 pm
3:15 pm - 7:00 pm
5:30 pm
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Continental breakfast available outside the auditorium
Child care rooms open; planned activities throughout the day for all children
Welcome/Opening Remarks
Genetics
Neuroimaging
Break
Clinical Management
Seizures
Sensorimotor delays
Lunch; pick up box lunches
Child care rooms open
Cortical Vision Impairment
Neurocognition
Psychosocial Issues
Break
Carter Center Research:
Clinical Database, Rutgers, NIH
Panel Discussion
Vendor Fair Open
Dinner buffet
|
Lilly Conference Center Auditorium
Lilly Conference Rooms near the auditorium
Leslie Harley, Families for HoPE
presented by M. Muenke
presented by A. Hoon
presented by E. Levey
presented by E. Levey
presented by A. Hoon
Heritage Ballroom
Lilly Conference Rooms near the auditorium
presented by C. Roman
presented by C. Roesler
presented by M. Jain
presented by E. Stashinko, C. Roessler, M. Muenke
moderated by E. Stashinko
Located in lobby of Lilly Conference Center
Heritage Ballroom
|
Saturday, July 12
9:00 am - 12:00 pm
12:00 pm
1:30 pm - 4:30 pm
6:30 pm
Sunday, July 13
9:00am
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Workshop Sessions (to be announced)
Luncheon Buffet
Workshop Sessions (to be announced)
Dinner and Carnival
Breakfast
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Located in Lilly Conference Center
Located in Heritage Ballroom
Located in Lilly Conference Center
Located in Heritage Ballroom
Located in Heritage Ballroom
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