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

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

Wednesday, July 24

Sibshops: For Siblings Only (Ages 5 – 18+)
See description

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

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  
Rady Children’s Hospital presentation

Keynote Research Speaker: Research Updates
Stormy Chamberlain, PhD  |  Ben Philpot, PhD
See video recording

Updates from Ionis, Ovid and Roche
See video recording

Current Treatments and Efficacy in AS
Jessica Duis, MD  |  Mark Nespeca, MD  |  Elizabeth Berry-Kravitz, MD, PhD  |  Ron Thibert, MD, MsPH – Massachusetts General Hospital
See video recording  |  Session presentation

   
Just for Moms
Royal Tea Party (see description)
Alice Evans  |  Kathy McCullough
Just for Grandparents
Jeanne Rooney-Graves

 

   
Just for Moms
session can continue if needed
Just for Dads
Adam Moore and Kim Kubicza

AS Registry
Meagan Cross

Welcome Reception
Heavy appetizers will be available

Thursday, July 25

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.

A to Z / Angelman throughout the Lifespan
ASF AS Clinical Network Team: Jessica Duis, MD, MS |  Mark Nespeca, MD  |  Ron Thibert, MD, MsPH  
See session recording |   AS Ages 5 – 12 presentation

Natural History Study
Wen-Hann Tan, MD – Boston Children’s Hospital
See session recording

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
Session presentation

   
Neurobehavioral
Approaches I
Jane Summers, PhD  |
Erik Sell, MD
AS Genetics 101
Jessica Duis, MD, MS
See session recording
Diet & Nutrition and GI Issues
Heidi Pfeifer, RD, LDN | Ron Thibert, MD, MsPH

 

   
LGIT & Ketogenic Diets
Jessica Duis, MD, MS
See session recording
Neurobehavioral
Approaches II
Jane Summers, PhD  |
Erik Sell, MD
See session recording | Session presentation
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

 

   
Anxiety & Challenging
Behaviors
Christopher Keary, MD
See session recording
Sleep Issues
Amanda Tourjee, RN
See session recording
Clinical trials: What is possible, and what do we need to know
Rebecca Burdine, PhD

Friday, July 26

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

Landscape of resources for Adults with Complex Neurodevelopmental Disorders
Sherri Brothers, Executive Director of The ARC of Kentucky
See session recording

Chipping Away at the Mountain: How and Where to Start, Where to Go, How to Get There. Your Action Plan.
See session recording  | Session handout

 

How to Find, Hire, Train & Retain Care providers
See session recording

 

Housing Options
Nicole Jorwic, The ARC US
See session recording

   
Life Away from Home:
Day Programs
& Employment
See session recording
Living a Self-Determined Life at Home & In the Community

 

Letting Go, Trust, POA, MPOA, Continued Involvement, Independence: A How-To for Parents
See session recording

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

Communication starts with listening

 
I do, we do, you do: Speak AAC to teach AAC

 

Communication is how we PLAY!

 

How do families keep going with AAC?

 

Partnering with schools or agencies

 

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

 

Saturday, July 27

 

 
Advocating for your Child
at IEP Meetings
Michelle Harvey, MEd, ABASession handout
Government Benefits & Resources
Eric Wright, Ed. D. 
Special Needs Trusts & Life Vision Planning
Mary Anne Ehlert, Protected Tomorrows 

 

 
IEP Goals & Objectives
Michelle Harvey, MEd, ABA
IEP Reflection Tool
IEP Goals & Objectives
Telling your Story: Effective Advocating
Pat Hornbecker Service Map Template
Service Map Legend
Special Needs Trusts & Life Vision Planning (cont’d)

 

 

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.