Understanding It All 

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Photo courtesy Adam Barker/Visit Salt Lake

 

Angelman Syndrome can be confusing and difficult to understand, even for the most seasoned "veterans"-those that have been dealing with AS for many years and for those of us that may be relatively new to AS.

 

At the 2011 ASF Biennial Conference, you will hear from experts that have worked with many individuals with AS and their families, and learn in understandable language about AS. Thursday, July 28, 2011, is the Family Medical and Research Day. Come to the Crossroads and learn and ask questions about all things Angelman!

 

Not a science buff-or maybe you are?? Genetics 101 will explain in simple terminology what happens in AS, what does that term "imprinting" really mean, and how does the gene, UBE3A, cause AS? How might specific genetic types of AS increase the risk for future children? Dr. Charlie Williams will present on these topics, as well as answer your questions about AS genetics.

 

Do you wonder what life may have in store for your individual with Angelman syndrome? As the natural history of AS becomes better understood, certain health problems have been identified that continue into or develop during adulthood. Some of these problems have been reported in the literature but others have been identified from the shared experience of families and health practitioners. Come hear Dr. Charlie Williams cover the landscape of various medical issues known to be associated with AS. A time for discussion and comments about the health issues presented will also be available.

 

Seizures in AS can be a scary and sometimes a life-threatening issue. Seizures in AS are often very complex and can be very difficult to treat. This session will provide an overview of the natural history of seizures in individuals with Angelman syndrome, including the different types of seizures which may occur, the frequency in which they occur and what ages they tend to be most common. Join Dr. Ronald Thibert and Dr. Mark Nespeca during several conference sessions as they provide an overview of seizures, discuss treatment of seizures, as well as participate on a panel discussion on seizures in an Ask the Doctors session Thursday afternoon. Seizures 101 and Treatment of Seizures in AS will be repeated sessions due to popular demand for both!

 

Behaviors got you down? How do other families seem to make this work? What can we do to help our individual with AS with her/his behaviors? How can we change aggressive behaviors? Dr. Jim Ball and Dr. Jane Summers will be addressing the issues of challenging and aggressive behaviors in AS. In addition, CASS (the Canadian Angelman Syndrome Society) and the ASF, along with Renee and Fred Pritzker, have formally sponsored an expert panel to develop guidelines to assist with understanding the causes of challenging behavior and to recommend practical and helpful interventions. Dr. Summers, the expert panel chair, will provide an outline from the panel of key issues in relation to challenging behavior in individuals with Angelman Syndrome and an update about the work of the expert panel.

 

When will my child sleep and, therefore, when will I/we? ASF research efforts awarded the University of Nebraska-Omaha the opportunity to study the use of behavioral strategies to address common sleep problems in individuals with AS. Using three different behavioral approaches, the study revealed that the methods resulted in significantly fewer nighttime sleep disruptions, fewer disruptive bedtime and nighttime behaviors and significantly improved ability of individuals to fall asleep by themselves. Kristi DeHaai will present the methods and techniques used and how behavioral strategies can be applied to your individual's daily routine to help get some sleep! 

 

Things you need to do:

 

Register for the 2011 ASF Biennial Conference - Register now to get the Early Bird Discount. Remember-individuals with AS receive complimentary registration at 2011 Conference!

 

Make your hotel reservations - reservations must be made by June 24 to be guaranteed the discounted room rate

 

Make airline reservations 

 

Rent a car while you are in Salt Lake City 

 

For extra family fun while in Salt Lake City, check out these things to do!

 

Temple Square Visitor's Center 

Lagoon Park 

This is the Place Heritage Park 

Sheila Wenger

Special Events Coordinator & Meeting Planner

Angelman Syndrome Foundation

4255 Westbrook Drive, Suite 219

Aurora, IL 60504

800-432-6435; Int'l 630-978-4245

Fax: 630-978-7408

swenger@angelman.org 

www.angelman.org

I may not speak, but I have much to say.