ASF VirtualpaloozaJuly 27 - August 14, 2020
Thank you to all of the presenters for sharing their invaluable time and expertise with us!
Session recordings are available below.
Representatives from pharmaceutical and biotech companies working on Angelman therapeutics will present updates on their work.
Companies presenting are: Biogen, GeneTx, Ionis, Neuren, OVID, PTC, Roche/Genentech, Stridebio
Ron Thibert, DO, MsPH
Seizures in AS
Jessica Duis, MD, MS
Diets and Supplements for Individuals with AS
Dr. Duis will discuss practical information to transition your child/adult to low carbohydrate diets, important things like, side effects to consider and manage and the use of supplements in AS.
Rebecca Burdine, PhD
Genetics 101 and the Promise of Therapeutics
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.
Amanda Tourjee, RN
Changes In Teen Angels: The impact of bodily changes during adolescence
This presentation will address all the changes that occur during puberty, such as: how to recognize the first signs of puberty, what to expect during those hormonal changes and how to troubleshoot any problems your adolescent may have. From you daughter's first period, to tips and tricks regarding shaving your son's face, this presentation will cover all things teen spirit!
Erin Sheldon, M.Ed & Tabitha Jones-Wohleber, SLP
Communication Pilot Update
Erin and Tabi began a Communication/AAC Pilot Program with 25 family members in early March. They will share information about the pilot program and plans for rolling out a new communication/AAC training program.
Lizzie’s Top 10 Product Review
Lizzie will share her personal top 10 products that help everyday life with her Angel. She will also share with you ways to get the cost of some products covered by insurance or medicaid.
Mary Anne Ehlert, CFP
Charting the Journey
This session will be uplifting, interactive and educational, as well as provide a basic understanding of some important facts. Participants will develop the foundation for their family’s own personal Future Care Plan™. We will discuss: How to create a map of the future; How to prepare legally and financially; incorporate and maximize government benefits; Transition; Housing; Medical; and Building a support network.
Christopher Keary, MD
Anxiety and Behavioral Concerns in Angelman Syndrome
We will review common behavioral concerns in kids, teens and adults with AS that have been presented by parents and identified in research. We will discuss recent efforts to develop standardized treatments for these behavioral concerns that are effective and minimize risk.
Chipping Away at the Mountain: Journey to Adulthood
When & How to Start, Where to go, Who to talk to. Develop your own Action Plan to Success.
Living Life at Home Using
I will describe what self-determination is and how to successfully implement this arrangement for people with Angelman syndrome.
Lynne Bird, MD
Symptom & Treatment Checklist for Your IEP
A new document - Physician's Note: Symptom & Treatment Checklist - can be tailored to each individual's medical needs and circumstances, will be introduced. This document can be attached to an IEP so that each of the needs are addressed in the IEP meeting and incorporated into the formal IEP document.