4:00-6:00 PM
6:00-9:00 PM |
Registration
Red Carpet Event
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7:30-8:30 AM
8:00 AM-5:30 PM |
Registration
Buffet Breakfast Exhibits and Children's Activity Room Open Special Sibling and Patient Activities 1:00-4:30 Special guests: Ferrets and Friends Capital Music Therapy Services |
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8:30-9:00 AM
9:00-9:30 AM 9:30-10:00 AM 10:00-10:30 AM 10:30-11:00 AM 11:00-11:30 AM 11:30-11:45 AM 11:45AM-1:00 PM |
Opening Welcome
Past, Present, and Future Registry and Research BREAK Consensus Work and Global Updates Natural History and New Challenges Uncovered Update on METAglut1 blood test development for the timely diagnosis of GLUT1 DS LUNCH AND GROUP PHOTO |
Glut1 Deficiency Foundation
Dr. Darryl De Vivo Dr. Juan Pascual BREAK Dr. Jörg Klepper Dr. Michèl Willemsen Dr. Vincent Petit LUNCH AND PHOTO |
1:00-1:30 PM
1:30-2:00 PM 2:00-2:30 PM 2:30-2:45 PM 2:45-3:15 PM 3:15-3:45 PM 3:45-4:30 PM |
Movement Disorders in Glut1 Deficiency
Seizures in Glut1 Deficiency Cognitive Considerations in Glut1 Deficiency BREAK Other Symptoms in Glut1 Deficiency Glut1 Deficiency in Adulthood Treatments Overview Anticonvulsants Gene Therapy |
Dr. Toni Pearson
Dr. Stéphane Auvin Dr. Veronica Hinton BREAK Dr. Juan Pascual Dr. Mackenzie Cervenka Dr. Jörg Klepper Dr. Nicole Heussinger Dr. Smitha Jagadish |
4:30-5:30 PM
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Cooking, Sampling, Visiting Booths
Scientific Poster Session |
SOCIAL EVENT
7:30-8:30 PM |
7:30-8:30 AM
8:00 AM-5:30 PM |
Registration
Buffet Breakfast Exhibits and Children's Activity Room Open Special Activities 2:30-4:30 |
8:30-9:15 AM
9:15-10:00 AM 10:00-10:30 AM |
Ketogenic Diets in Childhood
Ketogenic Diets in Adulthood Best Practices and Fine Tuning in Ketogenic Diets Influences on Ketosis BREAK |
Dr. Eric Kossoff
Dr. Mackenzie Cervenka Wesley Lowman, RDN, LDN Dr. Dominic D'Agostino BREAK |
10:30 AM-12:00 NOON
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CHOOSE ONE SESSION FROM BELOW
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KETO SESSION
Simple and Sustainable Keto Dawn Martenz Keto Kitchen Tips Maria Rebbecchi Keto Independence Leslie Holleman Feeding Tube Tips Kelly Jones Q & A Session Moderator: Dr. Dominic D'Agostino |
NEW FAMILIES SESSION
Glut1 101 Dr. Darryl De Vivo Learning Strategies Dr. Veronica Hinton Therapy Strategies Rachel Salazar Family Advocacy Erin Meisner Q & A Session Moderator: April York |
TEEN AND ADULT PATIENT AND PARENT SESSION
Survey Insights Dr. Mackenzie Cervenka Registry Insights Dr. Juan Pascual Identifying and Meeting Needs Open Discussions Q & A Session Moderator: Kris Engelstad |
12:00-1:00 PM
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LUNCH
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LUNCH
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1:00-2:15 PM
2:15-2:30 PM |
Research Updates and Panel Discussion
NIH Programs Genes Ketone Esters New Ideas CBD Oil for Seizures Moderator: Dr. Tom Rebbecchi BREAK |
Dr. Adam Hartman Dr. Umrao Monani Dr. Dominic D'Agostino Dr. Juan Pascual Dr. Karthik Rajasekaran BREAK |
1:00-2:00 Sibling Session
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2:30-4:30 PM
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CHOOSE ONE SESSION FROM BELOW
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PATIENT SESSION (teens and adults)
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PARENT SESSION
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PROFESSIONAL SESSION
Roundtable Discussions:
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CHILDREN'S SESSION
Special Entertainment and Structured Activities
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4:30-5:00 PM
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Closing Session
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6:30-10:00 PM
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Twilight Monument Tour
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8:30 AM - 1:00 PM
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United States Capitol Building Guided Tour
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