2023 ASF Virtual Conference
July 8, 2023All videos can be found below or go to the 2023 ASF Virtual Conference YouTube playlist.
Send any questions about presentations to kely@angelman.org. 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