AGENDA
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
7:00PM EST
Industry Update
Representatives from pharmaceutical and biotech companies working on Angelman therapeutics will present updates on their work.
Monday, August 2, 2021
8:00PM EST
Clinical Trials Panel
Dr. Elizabeth Berry-Kravis
Dr. Shafali Jeste
Dr. Carlos Bacino
Tuesday, August 3, 2021
8:00PM EST
Developing Therapies for AS Panel
Dr. Stormy Chamberlain
Dr. Elizabeth Jalazo
Dr. Lynne Bird
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
Thursday, August 5, 2021
8:00PM EST
Behavior and Anxiety Panel
Dr. Christopher Keary
Dr. Anne Wheeler
Dr. Anjali Sadhwani
Dr. Cesar Ochoa-Lubinoff
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
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
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
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
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
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
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
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
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
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
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
4:30PM EST