2019 Conference Agenda

 

WEDNESDAY, JULY 17, 2019 

 

 

 

 

 

Start Time

End Time

Function

Speaker 

Room

4:30 PM

5:30 PM

New Family Orientation (Family)

 

Legends V, VI, VII

5:30 PM

7:00 PM

Cocktail reception for Science meeting

 

Legends Pre-function

7:30 PM

9:30 PM

Poker (all registrants)

 

Legends III

 

 

 

 

 

 

THURSDAY, JULY 18, 2019 

 

 

 

 

 

Start Time

End Time

Function

Speaker 

Room

7:00 AM

5:00 PM

Registration

 

Legends Pre-function Space

6:30 AM

8:00 AM

Breakfast

 

Discovery Center AB

8:00 AM

8:45 AM

Parade

Welcome remarks

Tessa Quinlan

Vanessa Vogel-Farley

Parade into General Session Room

8:45 AM

9:45 AM

Life, love and awesomeness- living a life you never expected

Rachel Callandar 

Legends IV, V, VI, VII

9:45 AM

10:05 AM

Morning Break

 

Legends Pre-function Space

10:05 AM

10:25 AM

Genetics 101: Duplications of the 15q11-13 Region

Brenda Finucane

Legends IV, V, VI, VII

10:25 AM

10:45 AM

Ovid update

Dimitrios Arkilo, Celia Zinger, Luke Rosen

Legends IV, V, VI, VII

10:45 AM

11:05 AM

Understanding Neurodevelopmental Disorders Using Stem Cell Derived Models of the Growing Brain

Jon Bernstein

Legends IV, V, VI, VII

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

Legends IV, V, VI, VII

11:30 AM

11:50 AM

What is UBE3A and Why is it Talked About so Often in Dup15q?

Eric Levine

Legends IV, V, VI, VII

11:50 AM

12:50 PM

Lunch

 

Discovery Center AB

12:50 PM

1:20 PM

Translational outcome measures in models of chromosome 15q11.2-q13 duplication

Jill Silverman

Legends IV, V, VI, VII

1:05 PM

1:40 PM

Dup15q Alliance Supported Fellow and beyond: An All-Optical Electrophysiology Platform for Understanding Disorders of the Brain

Dr. James Fink

Legends IV, V, VI, VII

1:40 PM

1:45 PM

Dup15q Alliance Supported Fellow and Beyond

Vidya Saravanapandian

Legends IV, V, VI, VII

1:45 PM

2:10 PM

Afternoon Break

 

Legends Pre-function Space

2:10 PM

2:40 PM

Gene Therapies/CRiSPR

Stormy Chamberlain

Legends IV, V, VI, VII

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 

Breakout Room 1 (Panel)- Champions III

2:40 PM

3:40 PM

Pre-Transition Track: IEP Goal Writing + Advocacy

Charlotte DiStefano

Breakout Room 2- Legends IV, V, VI, VII

3:40 PM

4:10 PM

Education and Intervention for School-Age Children

Catherine Whitcher 

Breakout Room 2 (Panel)- Legends IV, V, VI, VII

 

 

 

 

 

FRIDAY, JULY 19, 2019 

 

 

 

 

Start Time

End Time

Function

Speaker 

Room

6:30 AM

8:00 AM

Breakfast

 

Discovery Center AB

7:00 AM

5:00 PM

Registration

 

Legends Pre-function Space

7:15 AM

8:00 AM

International Members Meeting: All international attendees welcome

Fernando Gomez

Legends Pre-function Space

7:15 AM

8:00 AM

Breaking down the Transition IEP: A Resource Guide for Parents

Brandi Viter

Breakout Room 2- Legends I, II

7:15 AM

8:00 AM

IEP Small group presentation - Special Education Hot Topics

Catherine Whitcher

Breakout Room 3- Champions III

7:15 AM

8:00 AM

Peer Supporters/Regional Representative Meeting

Naka King, Erika Clayon, Krissa Harris

Breakout Room 4- Legends IV, V, VI, VII

8:00 AM

8:30 AM

What's in a Name? Symptoms versus Causes in the Diagnostic Age

Brenda Finucane

Legends IV, V, VI, VII

8:30 AM

8:55 AM

Dup15q Alliance Supported Fellow and Beyond - TBD

Kevin Hope

Legends IV, V, VI, VII

8:55 AM

9:40 AM

Comorbid Diagnoses in Dup15q Syndrome (Non-Seizures)

Ron Thibert DO & Dr. Shafali Jeste

Legends IV, V, VI, VII

9:40 AM

10:00 AM

Interstitial Duplications (Kimberly Parkin) Myclonus and Neurogenetic Syndromes (Stephanie Yemane)

Kimberly Parkin/Stephanie Yemane (MGH)

Legends IV, V, VI, VII

10:00 AM

10:30 AM

Identification and Management of Seizures in 15q Duplication syndrome

Ron Thibert DO

Legends IV, V, VI, VII

10:30 AM

10:45 AM

Morning Break

 

Legends Pre-function Space

10:45 AM

11:05 AM

Understanding the importance of the Autism BrainNet

Alycia Halladay

Legends IV, V, VI, VII

11:05 AM

11:40 AM

CBD: (Epidiolex)

Orrin Devinsky

Legends IV, V, VI, VII

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/Childcare drop-off

 

Discovery Center AB for Lunch/ Childcare Drop-off: Champions pre-function area

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

Breakout Room 1- Legends I, II

1:30 PM

2:20 PM

Service dogs 101

Amanda Pratt

Breakout Room 2- Champions III

1:30 PM

2:20 PM

CBD/Medical Marijuana Discussion

Marlene Schwan

Breakout Room 3- Legends IV, V, VI, VII

2:20 PM

2:40 PM

Afternoon Break

 

Legends Pre-function Space

2:40 PM

4:40 PM

Fear to Love- the hero's journey

Rachel Callander

Legends IV, V, VI, VII

4:40 PM

5:40 PM

Break-out: Extended Family Support Session

Tom Doyle

Legends III

4:40 PM

5:40 PM

Break-out session: Mom's group (Birth-school age)

 

Legends IV, V, VI, VII

4:40 PM

5:40 PM

Break-out session: Mom's group (School-age to adolescence)

 

Legends IV, V, VI, VII

4:40 PM

5:40 PM

Break-out session: Mom's group (Adolescent-Adult)

 

Legends I, II

4:40 PM

5:40 PM

Break-out session: Dad's group (over 12)

 

Champions III

4:40 PM

5:40 PM

Break-out session: Dad's group (under 12)

 

Champions III

5:30 PM

9:30 PM

Museum Offsite Event (Houston Children's Museum)

 

Children’s Museum of Houston

 

 

 

 

 

SATURDAY, JULY 20, 2019 

 

 

 

 

 

Start Time

End Time

Function

Speaker 

Room

6:30 AM

8:00 AM

Breakfast

 

Discovery Center AB

7:00 AM

12:00 PM

Registration

 

Legends Pre-function Space

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

Legends IV, V, VI, VII

8:30 AM

9:00 AM

Updates on clinical trial readiness in Dup15q syndrome

Dr. Shafali Jeste

Legends IV, V, VI, VII

9:00 AM

9:10 AM

Intro to "Super Duper Siblings" Sessions

Tessa Quinlan

Legends IV, V, VI, VII

9:10 AM

10:00 AM

Special Needs Dentistry

Dr. David Fray

Breakout Room 1- Legends IV, V, VI, VII

9:10 AM

10:00 AM

How To Live Up To Our Full Individual Health Potential

Dr. Brian Anderson

Breakout Room 2- Legends I, II

9:10 AM

10:00 AM

Siblings Session (younger)-siblings only

Tessa Quinlan

Breakout Room 3- Champions III

9:10 AM

10:00 AM

Siblings Session (older)-siblings only

 

Breakout Room 4- Legends III

10:00 AM

10:20 AM

Morning Break

 

Legends Pre-function Space

10:20 AM

10:40 AM

The Epilepsy Learning Healthcare System (ELHS)

Kathleen Farrell and Alison Kukla

Legends IV, V, VI, VII

10:40 AM

11:10 AM

What is the Alliance?

Dup15q Alliance Board/Executive Director 

Legends IV, V, VI, VII

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

Legends IV, V, VI, VII

12:00 PM

12:15 PM

Conference Chair Presentation: The Importance of Being Part of a Bigger Community

Tessa Quinlan

Legends IV, V, VI, VII

12:15 PM

12:30 PM

2021 Conference Location Announcement and Closing Ceremony

Tessa Quinlan

Legends IV, V, VI, VII