Angelman Syndrome Ireland – September article
Family Conference – Dublin July 2013.
ASI were delighted to welcome Dr. Ben Philpot to Dublin recently, whose trip afforded the opportunity to host a parent conference addressing research, communication and community living. The day’s three speakers focused on topics which had been raised as areas of interest by parents.
Heather Crawford, MBE, lead professional speech and language therapist for South Eastern Trust, Northern Ireland gave an insightful presentation throwing up as requested ideas new to a lot of parents, such as looking at what our AS children/adults need to communicate for and how to set communication boundaries to support non-verbal communication.
Dr. Ben Philpot, PHD and Associate Professor Department of Cell Biology & Physiology, University of North Carolina’s presentation on the current research offered parents a clear window to the high tech world of the path from the cell dish to finding compounds which may support therapeutic approaches for Angelman Syndrome. His in depth presentation greatly helped us to understand the overall picture of current research and its challenges.
Heather Lynch and Siodhna Kavanagh’s joint presentation from Camphill Communities offered a unique insight into the journey and opportunities this international organization can offer families though its 22 community based centres and projects in Ireland. Heathers focus on the transition from post school to further educational and living opportunities gave food for thought to many parents who have not yet reached this point and this in fact is an area we will aim to return to at a later parent forum.
This parent conference was one of four regional workshops hosted this year by ASI and they provide a key opportunity for families to meet regionally as one parent commented –“ with people who get it”. As our speakers kindly sat though coffee and lunch afterwards queries and questions were given an airing often not possible at larger events.
The sessions from the workshop are available to view on www.angelman.ie – Youtube with Dr. Philpot’s being made available in the coming weeks.
Dr. Ben Philpot, Siodhna Kavanagh (Seated), Heather Crawford and Heather Lynch.
For further information please contact Sara Hetherington at Admin@angelman.ie