2019 ASF Research Symposium
& Family Conference

Louisville, Kentucky

Research Symposium July 23 – 24  |  Family Conference 24 – 27

Angelman Syndrome Foundation 2019 Research Symposium and Family Conference

AS Families fight for their loved one with AS every day. What better place to gather than Louisville, the home of Muhammad Ali – the place where he started his fight. The gloves are off as we come together for interactive learning sessions, activities and 1:1 opportunities to engage with AS experts and peers.

Together we will all knock out AS!  #knockoutAS

Online registration closed July 8

About the 2019 Conference

Thank you to our 2019 Conference Sponsors!
Ionis

Diamond Sponsor

Biogen is a Diamond Sponsor of the2019 Angelman Syndrome Conference

Diamond Sponsor

Ovid Therapeutics

Diamond Sponsor

Sessions

This is a tentative schedule that will be updated and changed as plans/speakers are finalized.

 

Wednesday, July 24

10:00 am – 6:30 pm
ASF Family Conference Registration Desk Open

12 Noon – 4:00 pm
Sibshops: For Siblings Only (Ages 5 – 18+)
See session description

 

Sessions

12:15 – 12:25 pm
ASF Conference Welcome and Opening Session:  Who is the ASF and What Do We Do?  What to Expect at this Conference. What’s the Same, Improved, New!
Justin Grill, ASF Board President  |  Amanda Moore, ASF CEO  |  Elizabeth Jalazo, Clinical Director

 

12:25 – 1:25 pm
AS Clinics: What to Expect with Your Visits
Ralitza Gavrilova, MD – Mayo Clinic  |  Mark Nespeca, MD – Rady Children’s Hospital, San Diego  |  Ron Thibert, MD, MsPH – Massachusetts General Hospital

 

1:25 – 2:00 pm
Keynote Research Speaker: Research Updates
Stormy Chamberlain, PhD  |  Ben Philpot, PhD

 

2:00 – 3:15 pm
Updates from Ionis, Ovid and Roche

 

3:15 – 4:00 pm
Current Treatments and Efficacy in AS
Jessica Duis, MD  |  Mark Nespeca, MD  |  Elizabeth Berry-Kravitz, MD, PhD  |  Ron Thibert, MD, MsPH – Massachusetts General Hospital

 

15 Minute Break

 

4:15 – 5:15 pm  
Just for Moms
Royal Tea Party (see description)
Alice Evans  |  Kathy McCullough
Just for Grandparents
Jeanne Rooney-Graves

 

5:15 – 6:00 pm  
Just for Moms
session can continue if needed
Just for Dads
Adam Moore and Kim Kubicza

 

6:00 – 6:30 pm
AS Registry
Meagan Cross

 

6:45 – 9:00 pm
Welcome Reception
Heavy appetizers will be available

 

 

Thursday, July 25

7:00 am – 4:30 pm
ASF Family Conference Registration Desk Open

7:15 – 8:45 am
Breakfast on your own

9:00 am – 3:00 pm
Children’s Activities (Must sign up by July 1 through Conference registration)
Children, Individuals with AS and their care providers will visit Kentucky Kingdom & Hurricane Bay.  Cost is $25/person.

 

Sessions

9:00 – 10:15 am
A to Z / Angelman throughout the Lifespan
ASF AS Clinical Network Team: Jessica Duis, MD, MS |  Mark Nespeca, MD  |  Ron Thibert, MD, MsPH  

 

10:15 – 10:30 am
Natural History Study
Wen-Hann Tan, MD – Boston Children’s Hospital

 

30 Minute Coffee Break

 

11:00 am – 12 Noon
Seizures in Angelman Syndrome
ASF AS Clinic Neurologist Panel: Ron Thibert, MD, MsPH – Massachusetts General Hospital  |  Mark Nespeca, MD – Rady Children’s Hospital, San Diego  |  Elizabeth Berry-Kravitz, MD, PhD, Rush University Medical Center  |  Gali Heimer, MD, PhD, Israeli AS Clinic at The Edmond and Lily Safra Children’s Hospital

 

12 Noon – 1:15 pm
Lunch on your own

 

 

1:15 – 2:30 pm  
Neurobehavioral
Approaches I
Jane Summers, PhD  |
Erik Sell, MD
AS Genetics 101
Jessica Duis, MD, MS
Diet & Nutrition and GI Issues
Heidi Pfeifer, RD, LDN | Ron Thibert, MD, MsPH

 

2:45 – 4:00 pm  
LGIT & Ketogenic Diets
Jessica Duis, MD, MS
Neurobehavioral
Approaches II
Jane Summers, PhD  |
Erik Sell, MD
Autism Features in Chromosome 15 Disorders
Emma Baker, BPsySc, PhD
Clinical trials: What is possible, and what do we need to know
Rebecca Burdine, PhD

 
15 Minute Break

 

4:15 – 5:30 pm  
Anxiety & Challenging
Behaviors
Christopher Keary, MD
Sleep Issues
Amanda Tourjee, RN
Clinical trials: What is possible, and what do we need to know
Rebecca Burdine, PhD

 

5:30 – 6:45 pm
Dinner on your own

 

 

Friday, July 26

8:30 am – 4:30 pm
ASF Family Conference Registration Desk Open

7:15 – 8:45 am
Breakfast on your own

7:00 – 8:00 am
Fundraising with Kitty Murphy

9:00 am – 3:00 pm
Children’s Activities (Must sign up by July 1 through Conference registration)
Children, Individuals with AS and their care providers will visit The Louisville Zoo. Cost is $25/person.

 

Sessions

ADULT SUPPORTS & SERVICES

 Unless stated, sessions are led by Pat Hornbecker, Kathy Johnson, Matt Johnson and Todd Robertson

8:30 AM
Landscape of resources for Adults with Complex Neurodevelopmental Disorders
Sherri Brothers, Executive Director of The ARC of Kentucky

 

9:30 AM
Chipping Away at the Mountain: How and Where to Start, Where to Go, How to Get There. Your Action Plan.

 

15 Minute Break

 

10:45 AM
How to Find, Hire, Train & Retain Careproviders

 

12:00 Noon
Lunch on your own

 

1:15 PM
Housing Options
Nicole Jorwic, The ARC US

 

15 Minute Break

 

2:45 – 4:00 PM  
Life Away from Home:
Day Programs
& Employment
Living a Self-Determined Life at Home & In the Community

 

4:15 PM
Letting Go, Trust, POA, MPOA, Continued Involvement, Independence: A How-To for Parents

COMMUNICATIONS

Sessions led by Erin Sheldon, M.Ed, ABA and ASF Communication Advisory Committee, Margaret DeRamus, M.S., CCC-SLP and Sam Sennott, PhD

See session descriptions

8:30 AM
Communication starts with listening

 
9:30 AM
I do, we do, you do: Speak AAC to teach AAC

 

15 Minute Break

 

10:45 AM
Communication is how we PLAY!

 

12 Noon
Lunch on your own

 

1:15 PM
How do families keep going with AAC?

 

15 Minute Break

 

2:45 PM
Partnering with schools or agencies

 

4:15 PM
Communication Autonomy in Action: Hands-on, in-depth experience session

 

Saturday, July 27

7:15 – 8:30 am
Breakfast on your own

 

Sessions

8:30 – 9:45 am
Advocating for your Child
at IEP Meetings
Michelle Harvey, MEd, ABA
Government Benefits & Resources
Eric Wright, Ed. D.
Special Needs Trusts & Life Vision Planning
Mary Anne Ehlert, Protected Tomorrows

 

10:00 – 11:15 am
IEP Goals & Objectives
Michelle Harvey, MEd, ABA
Telling your Story: Effective Advocating
Pat Hornbecker
Special Needs Trusts & Life Vision Planning (cont’d)

 

 

11:15 am – 12:15 pm
Closing Session: Now What? Bringing it all Together. What We’ve Learned & Where to Go from Here.

 

The 2019 ASF Conference will take place at the:

Louisville Marriott Downtown
280 W Jefferson St, Louisville, KY 40202

 

Parking at the Marriott for Hotel Guests

The parking garage is located on the south side of the hotel off Liberty Street. It is an underground garage within the hotel.

When you enter the garage, you will take a white ticket. Upon check in, make sure to tell the associate you are parking so that they can activate your key card.

The self-parking rate is $19 for overnight guests. Valet parking is not applicable at this discount.

Upon departure, use your room keycard to raise the gate and then drop your key card in the box.

 

Parking Near the Conference for those Not Staying at the Hotel

There are parking lots/garages within blocks of the hotel where you can pay a daily parking fee. 

Below are a few options:

  • Jefferson Centre Garage ($10 per day) – 115 W. Jefferson St
  • Stark’s Parking Center ($10 per day)  – 430 S. Third St.
  • YMCA Outdoor Lot – ($3 per day)  –  601 S. Third St.

Louisville Marriott Downtown
280 W Jefferson St, Louisville, KY 40202

Marriott Louisville Downtown

Room rate: $159/night + tax  if booked by June 30

1-800-533-0127
Group name: Angelman Syndrome

Hotel space books up as the conference gets closer.  Make sure to reserve your room as soon as possible to ensure you will be in the same hotel as the conference.

A Few Highlights of the Louisville Marriott Downtown

Convenient meeting and gathering spaces in the hotel
lobby of the Louisville Marriott Downtown  
click to enlarge

Dining in the hotel:
Porch Kitchen & Bar
Starbucks
10 more restaurants located within a half mile

Fitness Center:
24 hour fitness center

Close to local attractions. Within a half mile from:
Muhammad Ali Center
Louisville Slugger Museum
Waterfront Park
Louisville Science Center
See the full list of attractions

Be sure to stop by and visit these exhibitors at the 2019 ASF Conference in the Salon Foyer. 

Wednesday: Noon – 5:30pm
Thursday: 7am – 4:30pm
Friday: 7am – 2:45pm

Click to visit their websites for more information about products and services.

Sleep Safe Beds
Abram's Nation logo
Mass Mutual Special Care
MassMutual - Special Care
Kayserbetten
Adaptive Imports
Angel Wear
Autism Brain Net
Courtney Bed - enclosed bed

Budget Planner

Download our Budget Planning Worksheet and start planning your trip. 

Scholarships

ASF Scholarships
The ASF offers a limited number of scholarships to aid families who may not otherwise be able to attend.  The application deadline was Wednesday, May 1, 2019.