2023 ASF Virtual Conference

2023 ASF Virtual Conference

July 8, 2023

All videos can be found below or go to the 2023 ASF Virtual Conference YouTube playlist.

Send any questions about presentations to Q&A will be compiled and shared later.

Welcome from Amanda Moore, CEO

Learn about recent accomplishments and plans for the future.

Pharma Industry Updates

 Ionis Pharmaceuticals

Becky Crean, PhD, Executive Director of Clinical Development at Ionis shares information about the company, their pipeline of products and their ASO clinical trial (Halos).

Neuruen Pharmaceuticals

Nancy Jones, Vice President of Clinical Development at Neuren Pharmaceuticals shares an update on the the company’s Angelman Syndrome Clinical Study.

Ultragenyx Pharmaceuticals

Kemi Olugemo, MD, FAAN at Ultragenyx shares information about Ultragenyx and the GTX-102 ASO Clinical Trial  in Angelman syndrome (KIK-AS), including program structure and endpoints.

Stepping Into AAC

A new project to support your individual’s communication journey.

Carole Zangari, PhD, CCC-SLP
Tabi Jones-Wohleber, SLP

ASF Center of Excellence

Dr. Duis discusses the coordination of care at the Children’s Hospital Colorado, an ASF Center of Excellence.

Jessica Duis, MD, MS

Behavior and Anxiety in AS

Learn common causes of behavior changes and when to consider adding medication. Learn about signs of anxiety as well as common triggers that can cause an increase in anxiety as well as treatment options and interventions.

Anjali Sadhwani, MD
Christopher Keary, MD
Anne Wheeler, PhD

Abnormal Movements in Angelman Syndrome

Dr. Carson discusses his research and findings on characterization and treatment of abnormal movements in Angelman syndrome.

Robert Carson, MD

Adult Care in Angelman Syndrome

Dr. Duis discusses many aspects of caring for teens and adults with AS. Topics covered are: transition of care, routine, nutrition, behavior, sleep and mobility.

Jessica Duis, MD, MS

Seizures in Angelman Syndrome

In this recording from a previous conference, Dr. Thibert discusses the progression of seizures in AS from the first seizure through adulthood, as well as potential causes and resources & treatments. 

Ron Thibert, DO, MsPH

Planning, Transitioning and More

This is the first video in Protected Tomorrow’s Parent University webinar series. It covers setting financial goals, legal and other important documents, measuring your progress and more. 

Then, you’ll be introduced the next parts of the Parent University series. 

Mary-Anne Ehlert, CFP

Angelman Syndrome through Adulthood

In this recording from a previous conference, Dr. Thibert shares information from his multidisciplinary clinic at Massachusetts General and results from a research project on adults and teens with Angelman syndrome.

Topics covered: Seizures, sleep, GI issues, orthopedics, behavior and more.

Ron Thibert, DO, MsPH

Send any questions about presentations to Q&A will be compiled and shared later.