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
| 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 |
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 |
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 |
