Schedule of Speakers for Families

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


Third Annual NIH Conference on Holoprosencephaly: Midline and Laterality Development

This conference is supported by the NIH Office of Rare Diseases
and the Carter Centers for Brain Research in Holoprosencephaly
and Related Malformations

Schedule of Speakers for Families

Tuesday, April 20, 2004

Day Three: Tuesday, 8:00 a.m. - 5:00 p.m.

Family Day

8:00 a.m. - 9:00 a.m. Focus Groups for Families

9:00 a.m. Max Muenke: Welcome and Opening of the Parent's Conference

Session I: Diagnosis: Learning More about your Child

9:15 a.m. - 9:40 a.m. General Overview of Holoprosencephaly

9:40 a.m. - 10:00 a.m. Neuroimaging: Brain Findings in Holoprosencephaly

10:00 a.m. - 10:15 a.m. Genetics of Holoprosencephaly

10:15 a.m. - 10:30 a.m. Session Questions & Answers/Discussion

10:30 a.m. -10:45 p.m. Break

Session II: Research Update

10:45-11:10 a.m. Carter Center Research:

11:10 a.m. - 11:35 a.m. Clinical Genetic Studies at NIH

11:35 a.m. - 12:00 p.m. Neurocognitive research at Rutgers Carter Center

12:00 p.m. - 1:30 p.m. Lunch On Your Own

Session III: Management of your Child

1:30 p.m. - 2:00 p.m. Sleep Disorders/ GI/ Endocrine issues

2:00 p.m. - 2:20 p.m. Evaluation and Mangement of a Child with Holoprosencephaly: Lessons Learned at the Carter Centers

2:20 p.m. - 2:40 p.m. Motor Dysfunction/Spasticity/Dystonia/ITB/Artane

2:40 p.m. - 3:00 p.m. Augmentative Communication: TBA (Nancy Inman, M.A.T., CCC-SLP

3:00 p.m. - 3:15 p.m. Break

Session IV: Parent to Parent: Sharing Experiences

3:15 p.m. - 4:15 p.m. Parent Roundtables:

4:15 p.m.- 5:00 p.m. Parent Organizational Committee Meetings

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Last Reviewed: March 2006