2017 Family Conference

dup15q version4 ed8
The 9th International Family Conference, Navigating the future, was held July 23rd – July 26th,2017 at Crowne Plaza Renando Beach and Marina California 


2017 Family Conference Schedule
Time Presentation Speaker Room Sponsor


July 23rd


4pm -Hotel Check-in       -Conference Registration           -Dup15q Store open   -Hotel Front Desk  
4:30-5:30pm New Family Orientation Meet/Greet Dup15q Alliance Board and administration Bay/Catalina  
5:30-7:30pm Dup15q Alliance Board Meeting (Private) Board of Directors Executive Boardroom  


July 24th


7:00am Conference Registration Opens   Coral Foyer  
8:30-9am Family Parade   Penn/Pacific  
9-9:10am Welcome: Opening Remarks Vanessa Vogel-Farley and Tom Doyle Penn/Pacific  
9:10-9:30am Positive Exposure Presentation Rick Guidotti Penn/Pacific The Cleary Family
9:30-10:25am Living with dup 15q- My Life in Colors Jeremy Sicile-Kira Penn/Pacific  
10:30-11:30am What’s in a Name? Symptoms versus Causes in the Diagnostic Age Brenda Finucane Penn/Pacific Geisinger Autism & Developmental Medicine Institute
10:30-11:30am Do I REALLY have to worry about their teeth too?” Dr. Jill Lasky, DDS Catalina The Porath Family
10:30-11:30am “Estate Planning for People with Special Needs” Victoria Maxwell-Kellam, JD, MBA, LLM Candidate Redondo1-2 Law Office of Victoria Maxwell
11:30-12:30pm Lunch   Seascape/Sol The Gazewood Family,     Hayley Doyle
12-12:30pm Childcare Sign-In Corporate Kids Promenade  
12:00-5pm Childcare (you need to have pre-registered to use this service!) Corporate Kids Promenade The Quinlan Family
12:30-2pm Break-out session: Mom’s group (Birth-4)   Penn/Pacific The Polak  Family
12:30-2pm Break-out session: Mom’s group (School-age)   Catalina  
12:30-2pm Break-out session: Mom’s group (Adolescent-Adult)   Bay  
12:30-2pm Break-out session: Dad’s group   Redondo 1&2  
2-2:15pm Break      
2:15-3:15pm “Super Duper Siblings”        Session for the whole family Elina Marchenko Seascape  

“Financial Planning for Dup15q Families”

“Special Needs Trusts-Planning for a Brighter Future”

Jeff Rozovics

Lisa Golshani

Bay/Catalina Rozovics Financial Services
3:15-3:30pm Break      
3:30-4:30pm Advocacy, Awareness and Outreach about Dup15q Syndrome in your community and beyond. Lauren Weissberg, Naka King, Vanessa Vogel-Farley Redondo 1&2 The Ciero Family,            The Agniel Family,           The Beres Family,           The Nation Family
4:30-5:30pm Extended Family (Grandparents/aunts/uncles/etc.) Tom Doyle Bay/Catalina The Rice Family and The Lowell Family
5:30pm-9pm Dinner/Raffle                                            -“Hometown” attire encouraged   Coral Ballroom  


July 25th


8-9am Regional Representatives Meeting Discussant: Vanessa-Vogel-Farley Bay  
9-10:30am “IEP Goal Writing & Advocacy” Catherine Whitcher Penn The Quinlan Family

“Thriving in adult life: supported living with friends”

Nicole Cleary/Terri Gray



9-10:30am Siblings Session (younger siblings) Tessa Quinlan/LaurenWeissberg Catalina  
9-10:30am Super Duper Siblings:        Siblings only (older siblings) Elina Miller Bay  
10:30-10:45am Break      
10:45-12:00pm Co-morbid Diagnoses (non-seizure) Dr. Amanda Gulsrud/ Dr. Shafali Jeste Penn The Pail Family
10:45-12:00pm “Residential Options: Creative Solutions to Long Term Care” Heather Stenberg Pacific Stephen’ Place
12pm-1pm Lunch   Seacape/Sol The Seagars Family

Medical marijuana & cannabidiol for treatment of pediatric epilepsy: a roadmap for parents.

Seizure Management

Dr. Shaun Hussain (via live Webinar )

Dr. Shafali Jeste

Dr. Rujuta Bhatt

Penn The Marmo Family
1-2:30pm “Augmentative and Alternative Communication and its use in individuals with complex communication needs” Kaitlyn Clarke Pacific  
1-2:30pm Genetics 101: Duplications of the 15q11-13 Region Brenda Finucane Redondo 1-3 The Polak Family
2:30-2:45pm Break      
2:45-4pm “The ABC’s of Effective Strategies to Support Behavior and Learning” Barbara Haas-Givler Penn  
2:45-4pm “Encopresis in Children and Adolescents with Autism, Effective Treatment” Dr. Fredric Daum Pacific  

Superplus- Augmentative and Alternative Communication (AAC) mobile app that helps non-verbal children  learn critical language skills

 Katrine Pedersen/Kristen McLoud


Redondo 1-3

4-5pm What to expect at a Dup15q Clinic visit Dr. Jane Kim and Dr. Shafali Jeste Penn The Jane Kim Family
5pm-6pm International Meeting International members welcome Catalina  
6pm-9pm Dinner on your own and Waterpark   Seaside Lagoon  


July 26th


8:30-9:30am How you can help answer the BIG dup15q syndrome questions! Vanessa Vogel-Farley Redondo 1-3  
  Being a good consumer of research, clinical trials, natural history studies, etc. Oluwaseun Ajayi Redondo 1-3 Jiyoung & Gabriel Ahn “In Honor of Lucas Ahn”
  Understanding the brains of people with Dup15 Alycia Halladay, Autism Brain Net Redondo 1-3 Autism Brain Net
9:30-10:35am Updates on Dup15q Alliance Funded Research   Redondo 1-3 The Karch Family
  “Preclinical Science in Dup15q: What and Why?” Jill Silverman, PhD Redono 1-3  
  “Hyperexcitability in stem cell-derived neurons from Dup15q patients” James Fink (Dup15q sponsored fellow) Redondo 1-3  
  “What can flies tell us about Dup15q?” Kevin Hope (Dup15q sponsored fellow) Redondo 1-3  
  Announcement of the 2017-2019 Dup15q Alliance Fellowship Winner Dr. Carolyn Schanen Redondo1-3  
10:35-10:40 Break      
10:40-11:20am Stereotypical behaviours in intellectually impaired students: analysis and intervention strategies Dr. Mauro Coppa Redondo 1-3 The Gifford Family
10:40-11:20am Potty Training Parent Panel Catalina  
11:20-11:45am The Importance of Being Part of a Bigger Community Sarah Porath Redondo 1-3  
11:45-12:00pm 2019 Conference Location Announcement and Closing Ceremony Tessa Quinlan, Vanessa Vogel-Farley Redondo 1-3  
12:00pm Hotel Check-Out      






Geisinger 1