AGENDA

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Sunday, August 1, 2021

6:00PM EST

ASF State of the Foundation

Come hear about the future plans for the Angelman Syndrome Foundation and how you can be involved.  CEO, Amanda Moore will talk about the AS landscape and the goals and objectives of the ASF moving forward.  This will also be your chance to share with her your thoughts, concerns and ideas for the AS community.

Amanda Moore, CEO

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7:00PM EST

Industry Update

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

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Monday, August 2, 2021

8:00PM EST

Clinical Trials Panel

Dr. Elizabeth Berry-Kravis

Dr. Shafali Jeste

Dr. Carlos Bacino

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Tuesday, August 3, 2021

8:00PM EST

Developing Therapies for AS Panel

Dr. Stormy Chamberlain

Dr. Elizabeth Jalazo

Dr. Lynne Bird

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Wednesday, August 4, 2021

8:00PM EST

Medical Care for All Ages Panel

Dr. Elizabeth Berry-Kravis

Dr. Jessica Duis

Dr. Mark Nespeca

Dr. Ron Thibert

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Thursday, August 5, 2021

8:00PM EST

Behavior and Anxiety Panel 

Dr. Christopher Keary

Dr. Anne Wheeler

Dr. Anjali Sadhwani

Dr. Cesar Ochoa-Lubinoff

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Friday, August 6, 2021

8:00PM EST

Seizures

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.

Dr. Ron Thibert

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Saturday, August 7, 2021

Breakout 1  |  11:00 AM EST

TRACK 1

Newly Diagnosed
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.

Dr. Elizabeth Jalazo

Kathryn Ely

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TRACK 2

IEPs

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.

Michelle Harvey Martin, M.Ed, BCBA

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TRACK 3

Communication Basics

There is only so much that a person with Angelman can communicate with their body. They need technology to share everything else. Teaching our children to use technology to communicate starts with us learning to use the same technology we want them to use. We cannot rely solely on talking to our kids with speech if they can’t use speech themselves. We need to talk to them in a way they can respond to. This session will review how families use communication technology (AAC) at home.

Using AAC technology doesn’t have to be work! In fact, our kids will use it best if we make it fun and playful. This hands-on session will be your opportunity to see how we use AAC in a range of activities you probably already do at home. Come explore what using AAC at home can look like.

Tabi Jones- Wohleber

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Breakout 2  |  12:15 PM EST

TRACK 1
Genetics 101 / 201

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.

Dr. Rebecca Burdine

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TRACK 2

Diet in AS

Ever wonder about diet in AS.  This is the session for you. Come hear from registered dietician Heidi Pfeifer from the AS Clinic in Boston about the various diets in AS and how they can support the overall health of your individual with AS.

Heidi Pfeifer

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TRACK 3

Financial Planning Q&A with Protected Tomorrows

This is an open Q&A session based on the pre-recorded presentations. This session will conclude at 1:45pm

Mary Anne Ehlert, CFP

Click here to view the Financial and Long Term Planning session

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Breakout 3  |  1:30 PM EST

TRACK 1

Sleep

We will talk about why sleep is important in AS, sleep issues that are common in AS, interventions and treatment for the sleep problems in AS and will open up for discussion at the end for any questions that parents might have.

Amanda Tourjee

Dr. Jane (Zheng) Fan

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TRACK 2

Insurance, Waivers and Angelman Syndrome - Community Alternatives

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

Dr. Eric Wright

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Breakout 4  |  2:45 PM EST

TRACK 1

Sibling Panel

Having a sibling with AS can often bring many questions, challenges, fears and more.  Come listen to a panel of siblings talk through these questions and give support, guidance and encouragement.  This is a great session for you to attend as a family to encourage open dialogue at your home.

Kathryn Ely - Moderator

Lesley McCallister

Drew Wilkerson

Alex Jamieson

Amber Rippy

Michelle Harvey Martin, M.Ed, BCBA

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TRACK 2

Communication Panel

One of the many questions we get at the foundation is around communication and best practices for those living with AS.  Come hear from a panel of experts and parents about their communication journey.  This will be a great session to gain some insight on your own journey as well as ask questions from the panel.

 

Tabi Jones-Wohleber, M.S., CCC-SLP

Becky Burdine, PhD

Karen Hoerst

Sarah Rivard

Carole Zangari, PhD, CCC-SLP

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4:30PM EST

Conference Wrap Up

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