16p Genetic Syndrome Foundation
16p11.2 Conference 2025 Registration Is Now Live!
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Time | Speaker | Title | Description | Duration |
---|---|---|---|---|
12:30 PM | Registration | 30 min | ||
1:00 PM | Dr. Faranak Herrera, DO, MPH | Welcome and Introduction | Welcome Speech | 30 min |
1:30 PM | Getting to Know the Researchers | Parents can walk to various booths to get to know the researchers | 60 min | |
2:30 PM | Tea or Coffee Break | 15 min | ||
2:45 PM | Clinical Visits & B-Roll Takes | 15 minute round tables for attendees to meet with various physicians and providers | 120 min | |
4:45 PM | Dr. Faranak Herrera, DO, MPH | What to Expect | How to Survive Conferences | 30 min |
5:15 PM | Dr. Ted Abel, MPhil, PhD | Molecular Pathways of Interest in 16p11.1 Deletion and Therapy | Research on the molecular pathways in 16p11.2 deletion that may be targets for therapy | 50 min |
8:00 PM | Fireworks Kickoff | Drinks/Dessert Reception watching Disneyland fireworks. | 120 min |
Time | Speaker | Title | Description | Duration |
---|---|---|---|---|
7:30 AM | Breakfast | Hansen’s | 30 min | |
8:00 AM | Dr. Ann Swillen, PhD | A Successful Model of Care for Rare Genetic Diseases | Holistic and Multidisciplinary care and research in persons with genetic syndromes/CNVs: the Leuven model | 30 min |
8:30 AM | Dr. Paul Wang, MD | Arbaclofen Clinical Trial and Hope for Therapy | Breaking News: The Results of Clinical Trials with Arbaclofen in 16p11.2 deletion patients | 50 min |
9:30 AM | Dr. Carly Demopoulos, PhD | Speech and 16p11.2 Deletion | Unique challenges with speech in 16p11.2 deletion and current research | 50 min |
10:30 AM | Tea or Coffee Break | 15 min | ||
10:45 AM | Dr. Carrie Bearden, PhD | 16p11.2 and Mental Health | Mental Health associations with 16p11.2 deletion and prevention | 50 min |
11:45 AM | Dr. Elizabeth Crouch, MD, PhD | Metabolism and 16p11.2 Deletion | Research on 16p11.2 deletion and metabolism with family input | 50 min |
12:45 PM | Lunch | Boxed lunches | 75 min | |
2:00 PM | Dr. Wendy Chung, MD, PhD | Clinical Care of the 16p11.2 Patient | Best practices, observed associations and therapies tried in clinical practice | 50 min |
3:00 PM | Dr. Angela Morgan, PhD | Clinical approach to speech therapy for 16p11.2 deletion | Best practices, observed associations and potential speech therapies | 50 min |
4:00 PM | Tea or coffee break | 10 min | ||
4:15 PM | Emily Barmania, MS2 | Family Breakout Session 1 - Catalina 3 | Sibling Considerations | 30 min |
4:15 PM | Dr. Kelsey Smith, PhD | Family Breakout Session 1 - Catalina 4 | Mental Health of Caregiver | 30 min |
4:15 PM | Dr. Faranak Herrera, DO, MPH | Family Breakout Session 1 - Catalina 5 | Puberty | 30 min |
4:15 PM | Scientist and Provider only Breakout Session | Making therapeutic connections | 60 min | |
4:45 PM | Vistica Wealth | Family Breakout Session 2 - Catalina 3 | Financial Considerations | 30 min |
4:45 PM | Jacob Barmania | Family Breakout Session 2 - Catalina 4 | Growing into Adulthood with 16p11.2 variation | 30 min |
4:45 PM | Sara Baum, MEd | Family Breakout Session 2 - Catalina 5 | Educational Considerations | 30 min |
7:00 PM | Dinner and Dancing Family Event | Opportunities to honor the greats, for mingling and connection | 150 min |
Time | Speaker | Title | Description | Duration |
---|---|---|---|---|
7:30 AM | Breakfast | Hansen’s | 30 min | |
8:00 AM | Dr. Paige Townsend, PhD | 16p11.2 Deletion Affects Sleep | Research on 16p11.2 deletion and sleep disturbances | 50 min |
9:00 AM | Dr. Faranak Herrera, DO, MPH | Our Foundation | The role of 16p11.2 Genetic Foundation and The Center of Excellence | 50 min |
10:00 AM | Tea or Coffee Break | 15 min | ||
10:15 AM | Nancy Ascencio, OTD(c) | The OT Handbook for 16p11.2 Individuals | A guide for patients and providers in proper OT care specific to 16p11.2 | 50 min |
11:15 AM | Dr. Faranak Herrera, DO, MPH | Closing Remarks | What to do with all of this information | 30 min |
11:45 AM | Researchers | Opportunity for further research interaction | 50 min | |
12:00 PM | Adjourn |