2019 Family Conference Schedule

The schedule of events is in progress. Check back for updates.

*Subject to change

 

Wednesday Evening, July 17, 2019
New Family Orientation  
Thursday, July 18, 2019

Title

Speaker

Parade and welcome remarks Tessa Quinlan
Life, love and awesomeness- living a life you never expected Rachel Callender
Genetics 101: Duplications of the 15q11-13 Region

What's in a Name? Symptoms Versus Causes in the Diagnostic Age
Brenda Finucane
What is "Preclinical" Research and Why is it Needed? Jill Silverman
iPS models and our plans to study the 15q duplication Jon Berstein
Circadian function and dysfunction in autism: opportunities for sleep interventions Chris Colwell
What Actually is the Dup15q Alliance? What Do They Do? Where Does the Money Go? Dup15q Alliance Board/Executive Director
What is UBe3A and Why is it Talked About so often in dup15q? Ben Philpot
Research Fellows Present: Hope Kevin Hope
Seizures: Managment/Clinical Care/Outcomes/Surgical interventions for Epilepsy Ron Thibert/CURE partnership
CBD: (Epidiolex) Marlene Schwan/Shaun Hussian/Orrin Devinsky 
Autism Brain Net Alycia Halladay
Prevalence and Feasibility of Newborn Screening for Chromosome 15 Imprinting Disorders: Progress to Date From 20,000 Infants David Golder
Peripheral Blood Biomarkers as Predictors of Phenotypes Related to Brain Specific Changes in Chromosome 15 Imprinting Disorders Emma Baker
Transition to Adulthood Track: Residential Options: Creative Solutions to Long Term Care Fernando Gomez and the Transitional Living Committee
Transition to adulthood track: Thriving in Adult Life: Supported Living with Friends/Parental Perspectives and experiences Fernando Gomez and the Transitional Living Committee
Pre-Transition Track: IEP Goal Writing & Advocacy Catherine Whitcher 
Pre-Transition Track: Augmentative and Alternative Communication/Potty Training
 
   
Friday, July 19, 2019         

Title

Speaker

Comorbid Diagnoses in Dup15q Syndrome (Non-Seizures)
Sleep talk
Ron Thibert 
Shafali/Rujuta
(Dup15q alliance clinicins)
Myocolous Kimberly Parkin/Stephanie 
Saravanapandian Fellowship update/UCLA research updates Shafali Jeste 
Estate Planning for People with Special Needs Jeff Rozovics /Andre Sam
International Members Meeting: All international attendees welcome Fernando Gomez
Peer Supporters/Regional Representative Meeting Naka King/Krissa Harris
Super Duper Ideas  
The Use of Music Therapy  
Service dogs 101
Amanda Pratt 
Convaid Presentation Cathy Mericle
Education Manager as well as a PT
Special Needs Denistry Dr. David Fray
Parental Mental Health  
Break-out: Extended Family support session  
Break-out session: Mom's group (Birth-4)  
Break-out session: Mom's group (School-age)  
Break-out session: Mom's group (Adolescent-Adult)  
Break-out session: Dad's group (over 12)  
Break-out session: Dad's group (under 12)  
Gene Therapies/CRiSPR Stormy Chamberlain
Ovid Update Luke Rosen/Celia Zinger
   
Saturday, July 20, 2019

Title

Speaker

Dup15q Clinics: What are they? Do I need to go? or How Do I Help Educate My Local Doctors? Vanessa Vogel -Farley
Epilepsy Foundatoin  
"Super Duper Siblings" Session For The Whole Family Elina Marchencko
Siblings Session (younger) Tessa Quinlan
Siblings Session (older) Elina Marchencko
I have experienced a loss, now what? Jeanine Rossbach
Use of Chiropratics in Disorders Dr. Brian Anderson 
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
Conference Chair Presentation: The Importance of Being Part of a Bigger Community Tessa Quinlan
2021 Conference Location Announcement and Closing Ceremony Tessa Quinlan