2017 Family Conference

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
Sunday	July 23rd	2017
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
Monday	July 24th	2017
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
2:15-3:15pm	“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
Tuesday	July 25th	2017
8-9am	Regional Representatives Meeting	Discussant: Vanessa-Vogel-Farley	Bay
9-10:30am	“IEP Goal Writing & Advocacy”	Catherine Whitcher	Penn	The Quinlan Family
9-10:30am	“Thriving in adult life: supported living with friends”	Nicole Cleary/Terri Gray	Pacific
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
1-2:30pm	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
2:45-4pm	Superplus- Augmentative and Alternative Communication (AAC) mobile app that helps non-verbal children learn critical language skills	Katrine Pedersen/Kristen McLoud	Redondo 1-3	Superplus
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
Wednesday	July 26th	2017
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