2019 International Family Conference
The 2019 Dup15q International Family Conference was held July 18th – July 20th, 2019 at the Royal Sonesta Houston Texas
Many of our conference sessions were recorded. Click on the links below to view individual sessions.
WEDNESDAY, JULY 17, 2019 |
||||||
| Start Time | End Time | Function | Speaker | |||
| 4:30 PM | 5:30 PM | New Family Orientation (Family) | ||||
| 5:30 PM | 7:00 PM | Cocktail reception for Science meeting | ||||
| 7:30 PM | 9:30 PM | Poker (all registrants) | ||||
THURSDAY, JULY 18, 2019 |
||||||
| Start Time | End Time | Function | Speaker | |||
| 7:00 AM | 5:00 AM | Registration | ||||
| 6:30 AM | 8:00 AM | Breakfast | ||||
| 8:00 AM | 8:45 AM | Parade and welcome remarks | Tessa Quinlan | |||
| 8:45 AM | 9:45 AM | Life, love and awesomeness- living a life you never expected | Rachel Callandar | |||
| 9:45 AM | 10:05 AM | Morning Break | ||||
| 10:05 AM | 11:50 AM | Family Conference General Session | ||||
| 10:05 AM | 10:25 AM | Genetics 101: Duplications of the 15q11-13 Region | Brenda Finucane | |||
| 10:25 AM | 10:45 AM | Ovid update | Dimitrios Arkilo, Celia Zinger, Luke Rosen | |||
| 10:45 AM | 11:05 AM | Understanding Neurodevelopmental Disorders Using Stem Cell Derived Models of the Growing Brain | Jon Bernstein | |||
| 11:05 AM | 11:30 AM | Prevalence and Feasibility of Newborn Screening for Chromosome 15 Imprinting Disorders: Progress to Date From 20,000 Infants | David Godler | |||
| 11:30 AM | 11:50 AM | What is UBE3A and Why is it Talked About so Often in Dup15q? | Ben Philpot | |||
| 11:50 AM | 12:50 PM | Lunch | ||||
| 12:50 PM | 1:45 PM | Family Conference General Session | ||||
| 12:50 PM | 1:20 PM | Translational outcome measures in models of chromosome 15q11.2-q13 duplication | Jill Silverman | |||
| 1:05 PM | 1:40 PM | Dup15q Alliance Supported Fellow and beyond: An All-Optical Electrophysiology Platform for Understanding Disorders of the Brain | Dr. Jame Fink | |||
| 1:40 PM | 1:45 PM | Dup15q Alliance Supported Fellow and Beyond | Vidya Saravanapandian | |||
| 1:45 PM | 2:10 PM | Afternoon Break | ||||
| 2:10 PM | 2:40 PM | Gene Therapies/CRiSPR | Stormy Chamberlain | |||
| 2:40 PM | 4:10 PM | Transition to Adulthood Track: Guiding your Duper Through the Transition to Adult Life | Fernando Gomez, Paul Karch, Ruth Kross,Margaret Keliher-Gibson, Laura Barteau-Stark, Brandi Viter, Anne Karch, Allison Kalnicki |
|||
| 2:40 PM | 3:40 PM | Pre-Transition Track: IEP Goal Writing + Advocacy | Catherine Whitcher | |||
| 3:40 PM | 4:10 PM | Education and Intervention for School-Age Children | Charlotte DiStefano | |||
| 5:30 PM | 7:00 PM | Welcome Family Confernece Reception | ||||
| Start Time | End Time | Function | Speaker | |||
| 6:30 AM | 8:00 AM | Breakfast | ||||
| 7:00 AM | 5:00 AM | Registration | ||||
| 7:15 AM | 8:00 AM | International Members Meeting: All international attendees welcome | Fernando Gomez | |||
| 7:15 AM | 8:00 AM | Breaking down the Transition IEP: A Resource Guide for Parents. | Brandi Viter | |||
| 7:15 AM | 8:00 AM | IEP Small group presentation – Special Education Hot Topics | Catherine Whitcher | |||
| 7:15 AM | 8:00 AM | Peer Supporters/Regional Representative Meeting | Naka King, Krissa Harris | |||
| 8:00 AM | 10:30 AM | Family Conference General Session | ||||
| 8:00 AM | 8:30 AM | What’s in a Name? Symptoms versus Causes in the Diagnostic Age | Brenda Finucane | |||
| 8:30 AM | 8:55 AM | Dup15q Alliance Supported Fellow and Beyond | Kevin Hope | |||
| 8:55 AM | 9:40 AM | Comorbid Diagnoses in Dup15q Syndrome (Non-Seizures) | Ron Thibert/Shafali Jeste | |||
| 9:40 AM | 10:00 AM | Interstitial Duplications (Kimberly Parkin) | Kimberly Parkin/Stephanie Yemane (MGH) | |||
| Myclonus and Neurogenetic Syndromes (Stephanie Yemane) | ||||||
| 10:00 AM | 10:30 AM | Identification and Management of Seizures in 15q Duplication syndrome | Ron Thibert | |||
| 10:30 AM | 10:45 AM | Morning Break | ||||
| 10:45 AM | 12:30 PM | Family Conference General Session | ||||
| 10:45 AM | 11:05 AM | Understanding the importance of the Autism BrainNet | Alycia Halladay | |||
| 11:05 AM | 11:40 AM | CBD: (Epidiolex) | Marlene Schwan/Orrin Devinsky (video) | |||
| 11:40 AM | 12:30 PM | Planning For Your Family and Your Loved One’s Future Made Easy | Andre Sam | |||
| 12:30 PM | 1:30 PM | Lunch/Chilcare drop-off | ||||
| 1:30 PM | 2:20 PM | The Use of Music Therapy: Sing, Move, Follow! Tips from a Music Therapist for using Music to Improve Communication, Motor and Behavior Skills | Patina Jackson | |||
| 1:30 PM | 2:20 PM | Service dogs 101 | Amanda Pratt | |||
| 1:30 PM | 2:20 PM | CBD/Medical Marijuana Discussion | Marlene Schwan | |||
| 2:20 PM | 2:40 PM | Afternoon Break | ||||
| 2:40 PM | 4:40 PM | Fear to Love- the hero’s journey | Rachel Callander | |||
| 4:40 PM | 5:40 PM | Break-out: Extended Family Support Session | Tom Doyle | |||
| 4:40 PM | 5:40 PM | Break-out session: Mom’s group (Birth-school age) | ||||
| 4:40 PM | 5:40 PM | Break-out session: Mom’s group (School-age to adolescence) | ||||
| 4:40 PM | 5:40 PM | Break-out session: Mom’s group (Adolescent-Adult) | ||||
| 4:40 PM | 5:40 PM | Break-out session: Dad’s group (over 12) | ||||
| 4:40 PM | 5:40 PM | Break-out session: Dad’s group (under 12) | ||||
| 5:30 PM | 9:30 PM | Museum Offsite Event (Houston Children’s Museum) | ||||
| Dinner at the Children’s Museum of Houston (5:45pm – 9:30pm) | ||||||
SATURDAY, JULY 20, 2019 |
||||||
| Start Time | End Time | Function | Speaker | |||
| 6:30 AM | 8:00 AM | Breakfast | ||||
| 7:00 AM | 12:00 PM | Registration | ||||
| 8:00 AM | 9:10 AM | Family Conference General Session | ||||
| 8:00 AM | 8:30 AM | Dup15q Clinics: What are they? Do I need to go? Or How Do I Help Educate My Local Doctors? |
Vanessa Vogel -Farley | |||
| 8:30 AM | 9:00 AM | Updates on clinical trial readiness in Dup15q syndrome | Shafali Jeste | |||
| 9:00 AM | 9:10 AM | Intro to “Super Duper Siblings” Sessions | Tessa Quinlan | |||
| 9:10 AM | 10:00 AM | Special Needs Dentistry | Dr. David Fray | |||
| 9:10 AM | 10:00 AM | How To Live Up To Our Full Individual Health Potential | Dr. Brian Anderson | |||
| 9:10 AM | 10:00 AM | Siblings Session (younger)-siblings only | Tessa Quinlan | |||
| 9:10 AM | 10:00 AM | Siblings Session (older)-siblings only | TBD | |||
| 10:00 AM | 10:20 AM | Morning Break | ||||
| 10:20 AM | 12:30 PM | Family Conference General Session | ||||
| 10:20 AM | 10:40 AM | The Epilepsy Learning Healthcare System (ELHS) | Kathleen Farrell and Alison Kukla | |||
| 10:40 AM | 11:10 AM | What Actually is the Dup15q Alliance? What Do They Do? Where Does the Money Go? | Dup15q Alliance Board/Executive Director | |||
| 11:10 AM | 12:00 PM | Why and How Do I Get Involved in Governmental Advocacy? Advocacy, Awareness and Outreach about Dup15q Syndrome in Your Community And Beyond | David Gifford & Julia Jordanich | |||
| 12:00 PM | 12:15 PM | Conference Chair Presentation: The Importance of Being Part of a Bigger Community | Tessa Quinlan | |||
| 12:15 PM | 12:30 PM | 2021 Conference Location Announcement and Closing Ceremony | Tessa Quinlan | |||
