AGENDA

Please note sessions are subject to change

Tuesday, August 2, 2022

10:00AM - 6:30PM CST

ASF Family Conference Registration Desk Open

12:00PM - 1:00PM CST

Welcome Session and Keynote Research Update 

1:00PM - 1:15PM CST

Update on Translational Research

1:15PM - 2:30PM CST

Industry Updates

Representatives from pharmaceutical and biotech companies working on Angelman therapeutics will present updates on their work.

1:15PM - 4:30PM CST

SIB SHOP

Sibshops are lively, pedal-to-the-metal celebrations of the many contributions made by brothers and sisters of kids with special needs. 

Sibshop is an exciting program just for brothers and sisters of kids with special needs. At a Sibshop, brothers and sisters will

  • Meet other brothers and sisters of children with Angelman syndrome

  • Have fun!

  • Talk with others who “get it” about the good (and sometimes not so good!) parts of having a sib with special needs

  • Learn more about Angelman syndrome and the services that people receive.

  • Have some more fun!

 

SIBSHOPS is a national acclaimed program that provides peer support with a

recreational environment. It’s designed to celebrate the many contributions

made by brothers and sisters of kids with special needs! Each workshop

encourages kids to participate in activities that encourage sharing laughter

and fun!! Kids will have a chance to meet other kids whose brother or

sister have Angelman syndrome and talk about the good and not-so-good parts of

having a sibling with Angelman syndrome.

2:30PM - 2:45PM CST

15 MINUTE BREAK

2:45PM - 3:45PM CST

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Just for Moms

Just for Dads

3:45PM - 4:30PM CST

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Just for Moms Overflow

Just for Dads Overflow

4:00PM - 5:00PM CST

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Just for Grandparents

Newly Diagnosed 101

Being newly diagnosed can be so very overwhelming. This session will discuss the first 100 days and how to proactively take hold of your child’s healthcare and development.

6:00PM - 8:00PM CST

Pool Party Welcome

Wednesday, August 3, 2022

7:00AM - 4:30PM CST

ASF Family Conference Registration Desk Open

7:15AM - 8:45AM CST

Breakfast on your own

8:00AM - 9:00AM CST

Yoga with Hilda

9:00AM - 10:30AM CST

Behavior and Anxiety in Angelman Syndrome

This esteemed panel will review common behavioral concerns in kids, teens and adults with AS that have been presented by parents and identified in research. They will discuss recent efforts to develop standardized treatments for these behavioral concerns that are effective and minimize risk.

10:30AM - 11:00AM CST

30 MINUTE BREAK

11:00AM - 12:30PM CST

AS Clinical Experts Panel - All you want and need to know about clinical care

12:30PM - 1:45PM CST

LUNCH ON YOUR OWN

1:45PM - 2:45PM CST

BREAKOUT SESSIONS

Mental Health and Best Practices for a Caregiver

All Things Diet in AS

Confused about what nutritional plans to follow for your kids? This session will discuss the options available, what’s good about them, what may not be good about them, and what can work for you.

2:45PM - 4:00PM CST

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All Things IEP

This session aims to review all things related to goals and objectives in the IEP. Attendees will become familiar with how goals and objectives are developed through assessments and data in the present levels section, how they are written, and how service time could be structured to accomplish those goals and objectives. In addition, attendees will walk away with a practical guide and reflection tool for evaluating their child's IEP document in the future.

All Things Insurance/Government 

We will review the changes related to insurance, laws, community alternatives and considerations related to the ever-changing public health needs.

4:00PM - 4:15PM CST

15 MINUTE BREAK

4:15PM - 5:45PM CST

All Things Seizures in AS

This session will touch on everything and anything around seizures affecting our individuals with AS.  If you have a question about seizures you need answered, this is the session for you.

6:30PM - 9:00PM CST

Welcome Reception

Thursday, August 4, 2022

7:15AM - 8:45AM CST

Breakfast 

8:30AM - 5:30PM CST

ASF Family Conference Registration Desk Open

9:00AM - 10:00AM CST

BREAKOUT SESSIONS

 Yoga for AS

AS Genetics 101

We will discuss the genetics underlying different types of Angelman syndrome and how loss of UBE3A function affects individuals. We will then look at the science that suggests therapeutics are possible and discuss what you need to know about how clinical trials work. Q and A after the session.

11:00AM - 11:15AM CST

15 MINUTE BREAK

12:00PM - 1:30PM CST

LUNCH ON YOUR OWN

1:30PM to 2:45PM CST

AAC Implementation, Part 1: Foundational Understandings
Communication is at the core of the human experience.  This session will explore foundational understandings to guide communication partners through discussion of the nature and nuances of communication, language, and connection with AAC!

2:00PM - 4:00PM CST

Friends with Wings

2:45PM - 3:00PM CST

15 MINUTE BREAK

3:00PM to 4:15PM CST

AAC Implementation, Part 2: Use-it-Tomorrow Strategies
Using AAC across environments and activities is rarely initially intuitive and can pose challenges of many stripes, even when the basics of AAC implementation are well understood.  This session will dive into actionable strategies to 1) Plan for AAC, 2) Speak AAC, and 3) Invite participation with AAC, in the context of everyday routines, fun family moments, and novel experiences.

4:15PM - 4:30PM CST

15 MINUTE BREAK

4:30PM to 5:45PM CST

AAC Implementation, Part 3: Communication Partner Skills
Communication partners of AAC learners play an essential role in shaping quality interactions.  From social closeness to language development, to supporting emotional competence, the actions and reactions of communication partners highlight the transactional nature of communication.  This session will explore strategies for honing communication partners' skills across interactions.

Friday, August 5, 2022

7:00AM - 8:00AM CST

Breakfast on your own

8:30AM - 12:00PM CST

Mary Anne Ehlers: Protected Tomorrows

12:00PM - 12:30PM CST

Closing Session