2019 International Family Conference

2019 Confernce logo New 1 1

 

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    
             

Sponsors

biogen Achieve Sponsor
ovid navbar brand logo
SFARI Logo
Autism BrainNet Duper Sponsor
Ionis Logo
Zogenix Super Duper Sponsor
Every Life logo
bigmountainmail Duper Sponsor
Geisinger 1
Eric Shaw
Barbara Lundgren
Samuel & Robin Rangel
Earlene McClendon
David Gifford
Ed Jordanich
Fernando Gomez
Lauren Weissberg
Paul Karch
Tessa Quinlan
Shane & Krissa Harris
Tiffany Ciero
Andrea True
John Driscoll & Co, Inc.
Jane Kim