Third Annual NIH Conference on Holoprosencephaly: Midline and Laterality Development - Schedule of Speakers for Families

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

• Chris Sarampote, Ph.D., Don Hadley, M.S., Kate Berg, Ph.D, Max Muenke, M.D.

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

Session I: Diagnosis: Learning More about your Child

• Moderator: Elaine Stashinko

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

• Jin Hahn, M.D., Stanford University, Stanford, Calif.

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

• Orit Glenn, M.D. University of California San Francisco, Calif.
  and/or Jin Hahn, M.D., Stanford University, Stanford, Calif.

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

• Max Muenke, M.D., National Institutes of Health, Bethesda, Md.

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

• Moderator: Nancy Clegg

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

• Harold C. Urschel III, MD, MMA
  Elaine Stashinko, Ph.D., R.N., Heather Kammann, KKI, Baltimore. Md.

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

• Felicitas Lacbawan, M.D., National Institutes of Health, Bethesda, Md.

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

• Judy Flax, Ph.D., Cynthia Roesler, M.S., Rutgers University, Newark, N.J.

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

Session III: Management of your Child

• Moderator: Heather Kammann

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

• Eric Levey, M.D., Kennedy Krieger Institute, Baltimore, Md.

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

• Jin Hahn, M.D., Stanford University, Stanford, Calif.

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

• Alec Hoon, M.D., MPH, Kennedy Krieger Institute, Baltimore, Md.

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

• Kennedy Krieger Institute, Baltimore, Md.

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

Session IV: Parent to Parent: Sharing Experiences

• Moderators: Vicky and Bob Vandervort

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

• Infant/Toddler group
• School Age
• Adolescence/Young Adult

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

• HPE Newsletter
• HPE Parent Organization

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