2017 ASF Research Symposium and Family Conference

Research Symposium July 11 – 12  |  Family Conference July 12 – 15

Held at the Arizona Grand Resort & Spa in Phoenix, Arizona

2017 ASF Conference - Empower Your Future

Thank you to our 2017 Conference Sponsors!

Love for Angels
Platinum Sponsor
Ovid Therapeutics - Bold Medicine
Platinum Sponsor
Prentke Romich
Gold Sponsor
Agilis Biotherapeutics
Silver and lanyard Sponsor
MassMutual - Special Care
Silver Sponsor
Sleep Safe Beds
Silver Sponsor
Canadian Angelman Syndrome Society
Silver Sponsor

Click the session survey to complete a brief survey about each session you attended. We appreciate your feedback! 

Presentation pdfs, supplemental links and recordings for select sessions will continue to be added when available. 

Wednesday, July 12:  Research Day


Welcome & Opening Session

Greg Dohrmann, ASF President & Eileen Braun, ASF Executive Director
Session Recording

Noon – 4 pm 
Sibshops: For Siblings Only
Dr. Robin Wilkerson
Session Survey

1:00 pm 
AS Clinics – What to Expect
Ralitza Gavrilova from Mayo Clinic
Session Survey  |  Session Recording

2:00 pm  
Just for Moms
Alice Evans
Session Survey

2:00 pm 
Just for Grandparents
Jeanne Rooney-Graves & Hannah O’Handley
Session Survey

3:30 pm  
Just for Dads
Brad McGarry & Eric Wright
Session Survey  |  Presentation pdf

3:30 pm  
Just for Other Family Members
Session Survey

4:15 pm  
Keynote Research Speaker – Research Updates
Stormy Chamberlain and Ben Philpot
Session Survey  |  Presentation pdf  |  Session Recording

5:15 pm 
Critical Components to Successful Clinical Trials
Becky Burdine
Session Survey  |  Session Recording

Thursday, July 13: Wellness Day

9:00 am 
Genetics 101
Stormy Chamberlain
Session Survey  |  Presentation pdf

9:00 am  
Low Glycemic Index Treatment (LGIT) and GI Issues in AS
Heidi Pfeifer & Ron Thibert
Session Survey  |  Session Recording

9:00 am  
Neurobehavioral Approaches in AS I
Jane Summers & Erick Sell
Session Survey  |  Presentation pdf  |  Session Recording

10:45 am  
Anxiety in AS
Chris Keary  & Ron Thibert
Session Survey  | Presentation pdf  |  Session Recording

1:15 pm  
Neurobehavioral Approaches in AS II
Jane Summers & Erick Sell
Session Survey  |  Presentation pdf  |  Session Recording

1:15 pm  
Early Adulthood Experience of Having a Sibling with a Developmental Disability
Robin Wilkerson
Session Survey  |  Presentation pdf  |  Presentation script  | Session Recording

1:15 pm 
Medication Management of Challenging Behaviors in Angelman
Logan Wink
Session Survey

1:15 pm  
Healthy Marriages
Robert Dell
Session Survey

2:45 pm 
Seizures in AS
Ron Thibert and AS Clinical Neurologists
Session Survey  |  Session Recording

4:15 pm  
Changes in Adolescence & Adulthood in AS
Anna Larson & Ron Thibert
Session Survey

4:15 pm  
Medical Emergencies in AS/Preparedness
Dr. Justin Grill
Session Survey

4:15 pm  
Optimizing Health & Cognition through Food
Isabel Orellana de Chang
Session Survey  |  Presentation  |  Session Recording

4:15 pm  
Healthy Single Parents
Robert Dell
Session Survey

Friday, July 14: Communication Day

8:30 am  
AS Families on the AAC Journey
Panel Discussion – Moderators: Erin Sheldon & Dr. Stephen Calculator
Session Survey  |  Session Recording

9:30 am  
Overview of Devices and Tablets and Information about Today’s Sessions
Erin Sheldon & Stephen Calculator
Session Survey

10:45 am  
Social Communication: Teens/Adults as Emerging Communicators – Social Commenting
Deanna Wagner
Session Survey  |  Presentation Notes  |  Book download

10:45 am  
Introduction to Core Word AAC Systems
Jennifer Marden
Session Survey  |  Presentation pdf  |  Session Recording

10:45 am  
Beginning the PODD Journey: Starting, Modeling and Persevering
Jodi Melendez
Session Survey

1:15 pm  
Social Communication: Teens/Adults as Emerging Communicators – Storytelling
Deanna Wagner
Session Survey  |  Presentation Notes  |  Book download  |  Session Recording

1:15 pm  
Creating Your Village: Moving Beyond Modeling to Create a Communication Team
Sam Sennott
Session Survey  |  Session Recording

1:15 pm  
How to Get Started and Early Literacy Assessments
Erin Sheldon
Session Survey

2:45 pm
PODD across the lifespan, from young children to adults
Jaquie Mills
Session Survey

2:45 pm  
Be a Super Core Word Modeler with Proloquo2Go
Jennifer Marden
Session Survey  |  Presentation pdf  |  Session Recording

2:45 pm 
Shared Reading with PODD
Sam Sennott
Session Survey  |  Session Recording

4:15 pm  
Finding Allies and Developing Next Steps
Sam Sennott , Erin Sheldon, Deanna Wagner & Jaquie Mills
Session Survey  |  Session Recording

Saturday, July 15

8:15 am  
Financial Planning Workshop
Mary Anne Ehlert, Protected Tomorrows
Session Survey

8:30 am  
Housing & Working Options for Adults Who’s doing what?
Panel Discussion
Session Survey

8:30 am 
Parent-to-parent
Janna Murrell
Session Survey  | Presentation pdf

8:30 am 
IEP’s – Goals and Objectives
Michelle Harvey
Session Survey  |  Presentation pdf  |  IEP Reflection Tool  |  Session Recording

8:30 am 
Government Benefits New Directions for AS Families
Eric Wright
Session Survey  |  Presentation pdf  |  Session Recording

10:00 am  
Advocating for your Child at an IEP Meeting
Michelle Harvey
Session Survey

10:00 am  
Telling Your Story: An Advocacy Perspective
Eric Wright
Session Survey  |  Presentation pdf

10:00 am  
Adult Fitness & Recreation: Have More Fun
Todd Davis
Session Survey

11:30 am 
AS Educational Summit
Dr. Eric Wright, Brad McGarry, Michelle Harvey, Erin Sheldon, Dr. Jane Summers
Session Survey

Wednesday, July 12 – Research Day

6:00 -6:30 am – Yoga

7:00 am – 6:30 pm – Registration Desk Open
Location: 1st floor of the Arizona Grand Ballroom Building

Noon – Exhibit Hall Opens
Location: 1st floor Grand Ballroom Foyer

Noon – 4:00 pm – Sibshops: For Siblings Only (Ages 6 – 18+)
Lunch will not be served in the session. Please make sure siblings attending eat lunch prior to the session.

Breakout Sessions

12:15 – 1:00 pm
ASF Conference Welcome and Opening Session
Greg Dohrmann, Eileen Braun, TBA

1:00 – 1:45 pm
AS Clinics – What to Expect
Ralitza Gavrilova from Mayo Clinic

2:00 – 3:15 pm  
Just for Moms
Alice Evans
Just for Grandparents
Jeanne Rooney-Graves &
Hannah O’Handley

 

3:30 – 4:15 pm  
Just for Dads
Brad McGarry / Eric Wright
Just for Other Family Members
TBA


4:15 – 5:00 pm

Keynote Research Speaker – Research Updates
Stormy Chamberlain and Ben Philpot  

15 minute break

5:15 – 6:45 pm
Critical Components to Successful Clinical Trials
Becky Burdine and TBA

7:00 – 9:00 pm
Welcome Reception in the Water Park

10:00 pm – 6:00 am
Wake & Play Room is Open

Thursday, July 13 – Wellness Day

6:00 – 6:30 am – Yoga

7:00 am – 6:30 pm – Registration Desk Open
Location: 1st floor of the Arizona Grand Ballroom Building

7:15 am – 8:45 am – Not Your Geno-“typical” Breakfast

8:35 am – 4:00 pm – Children’s Activities (click to see more details)

Breakout Sessions
9:00 – 10:15 am      
Genetics 101
Stormy Chamberlain
LGIT & GI Issues in AS
Heidi Pfeifer & Ron Thibert, MGH
Neurobehavioral Approaches in AS I
Jane Summers & Erick Sell
 


30 minute break

10:45 am – Noon
Anxiety in AS
Chris Keary, MD and Ron Thibert, DO

Lunch on your own

1:15 – 2:30 pm      
Neurobehavioral Approaches in AS II
Jane Summers & Erick Sell
Early Adulthood Experience
of Having a Sibling with a Developmental Disability

Dr. Robin Wilkerson & Fran Jennings
Medication Management of Challenging Behaviors in Angelman
Logan Wink
Healthy Marriages
Robert Dell

2:45 – 4:00 pm
Seizures in AS
Ron Thibert and AS Clinical Neurologists


15 minute break

 

4:15 – 5:30 pm      
Changes in Adolescence & Adulthood in AS
Anna Larson & Ron Thibert
Medical Emergencies in AS/Preparedness
Dr. Justin Grill
Optimizing Health & Cognition through Food
Isabel Orellana de Chang
Healthy Single Parents
Robert Dell


5:30 – 6:45 pm

Dinner on Your Own

7:00 – 8:30 pm – “Appy Hour” Drop-in Sessions

These are small group, informal conversations between attendees and topic leaders.

Safety Sleeper Beds
Rose Morris  
Athletes in Tandem
Dennis Vanderheiden  
Dad’s AAC Group
David Rosenblatt  
Curing AS through Community Involvement – Effective Fundraising
Kitty Murphy 
Appy Hour is the Best Hour: Explore the full range of apps and communication devices from PRC

 

 LGIT – Practical Tips for Making this work at Home
Isabela Ornella de Chang
Live Boldly with Ovid Therapeutics
Dr. Tamara Agajanov
 

 

 
AAC at Schools: Goals &
Strategies for IEP’s

Jodi Melendez
Make & Take:
Conversation Books

Keisha Tipton
Tips for a Chemical Free
Lifestyle with Essential Oils

Shari Caspert

 

7:00 – 10:00 pm – Other Optional (fee-based) events
Parents’ Night Out   |  Family Glow-Golf

10:00 pm – 6:00 am
Wake & Play Room is Open

Friday, July 14 – Communication Day

6:00 -6:30 am – Yoga

7:15 – 8:45 am – State-by-State Breakfast

8:30 am – 5:30 pm – Registration Desk Open
Location: 1st floor of the Arizona Grand Ballroom Building

1:15 – Exhibit Hall Closes
Location: 1st Floor Grand Ballroom Foyer

8:00 am – 5:00 pm – Children’s Activities

Breakout Sessions

8:30 – 9:30 am
AS Families on the AAC Journey
AS Families Panel Discussion  |  Moderators: Erin Sheldon & Dr. Stephen Calculator

9:30 – 10:30 am
Overview of Devices and Tablets and Information about Today’s Sessions
Dr. Stephen Calculator & Erin Sheldon

15 minute break

10:45 – Noon    
Social Communication:
Teens/Adults as Emerging Communicators

Social Commenting
Deanna Wagner
Introduction to Core Word
AAC Systems

Jennifer Marden
Beginning the PODD Journey: Starting, Modeling and Persevering
Jodi Melendez


Lunch on your own

1:15 – 2:30 pm    
Social Communication:
Teens/Adults as Emerging Communicators

Storytelling
Deanna Wagner  
Shared Reading with Core Words
Sam Sennott
How to Get Started and Early Literacy Assesssments
Erin Sheldon


15 minute break

2:45 – 4:00 pm    
PODD across the lifespan, from young children to adults
Jaquie Mills
Be a Super Core Word Modeler with Proloquo2Go
Jennifer Marden
Shared Reading with PODD
Sam Sennott

 

15 minute break

4:15 pm
Finding Allies and Developing Next Steps
Sam Sennott / Erin Sheldon / Deanna Wagner / Jacquie Mills

5:30 pm
Dinner on your own

7:30 – 10:00 pm
Champagne Wishes & Sweet Dreams Celebration and Awards. 
Read more about this event.


10:00 pm – 6:00 am

Wake & Play Room is Open

Saturday, July 15

6:00 – 6:30 am – Yoga

7:15 am – 8:30 pm – Breakfast on your own

8:00 am – 1:00 pm – Registration Desk Open
Location: 1st floor of the Arizona Grand Ballroom Building

8:15 am – 11:30 am – Financial Planning Workshop
Mary Anne Ehlert/Protected Tomorrows

Breakout Sessions
8:30 – 9:45 am      
Housing & Working Options for Adults Who’s doing what?
Panel
Parent-to-parent
Janna Murrell
IEP’s – Goals and Objectives
Michelle Harvey
Government Benefits New Directions for AS Families
Eric Wright


15 minute break

10:00 – 11:15 am      
Advocating for your
Child at an IEP Meeting

Michelle Harvey
Telling Your Story: An Advocacy Perspective
Eric Wright
 Adult Fitness & Recreation: Have More Fun
Todd Davis
(continued)
Housing & Working Options for Adults Who’s doing what?
Panel


15 minute break

11:30 am – 12:30 pm
AS Educational Summit
Dr. Eric Wright, Brad McGarry, Michelle Harvey, Erin Sheldon, Dr. Jane Summers

12:30 – 1:00 pm
Closing Session

Thank you to our Sponsors of the 2017 ASF Conference listed at the top of this page.

Exhibitors of the 2017 ASF Conference

Representatives from these companies will be at the conference to display and discuss their products and services. 

AssistiveWare
Kayserbetten
Freedom Concepts, Inc.
If I Need Help
Saltillo
Abram's Bed

Interested in becoming a Sponsor or Exhibitor?

This is your opportunity to be part of the largest gathering of AS families, individuals, researchers, medical experts, and resource professionals of its kind, attracting more than 500 attendees.

See the 2017 ASF Conference Prospectus for details on becoming a sponsor or exhibitor.

ASF Family Conference Prospectus

Sponsor Opportunities Contact:
Sandy Ruffalo
800-432-6435
SRuffalo@angelman.org

Exhibit Opportunities Contact:
Lisa Appiarius
518-399-7181
LisaA@sswmeetings.com

If you plan to arrive before Wednesday, July 12, see Overflow Hotel Information below.

       

Arizona Grand Resort and SpaArizona Grand Resort & Spa
8000 S. Arizona Grand Parkway
Phoenix, Arizona 85044

Make your hotel reservation online now.
Or call 1-877-800-4888
ASF 2017 Family Conference Hotel Reservations $110/night (plus applicable taxes)
This rate is good until June 19, 2017.

Arizona Grand
Arizona Grand Resort and Spa - waterslide
Arizona Grand Resort and Spa
Arizona Grand Resort and Spa - golf

Overflow Hotel

The Arizona Grand Resort & Spa is SOLD OUT  Monday, July 10 through Tuesday, July 11. The ASF has arranged an overflow hotel with a discounted room rate, which is good for 7/10-7/16:

Residence Inn-Tempe (less than 1 mile from Arizona Grand)
5075 S. Priest Dr., Tempe, AZ 85282
ASF Room Block: $89/night plus state and local taxes

If you plan to arrive before Wednesdaymake your reservation online or call Marriott Reservations directly at (800) 331-3131.
Reserve your room by June 23 to receive the discounted rate!

Local Transportation