1. Introduction
Welcome to the second survey about Life with AGS. The first survey - The AGS Experience - ran for about a year and a half and was answered by 50 participants.
I am still writing my book about my experience as the parent of a child with AGS. My daughter Alaina is now 19 years and in her first year of college. While my book will focus on my experience as an AGS parent, I want to include insights and perspectives of other parents of AGS children, individuals with AGS, and relatives and close friends of those living with AGS.
As I've worked on my book, I've found that I have more questions to pose to all of you living with AGS every day, whether as an affected individual or one who knows or cares for someone with AGS. That's why I've posted this second survey.
All responses to this survey are completely anonymous. Any responses (or parts thereof) included in my book will not be identified in any way. My reason for maintaining anonymity is to elicit the most candid and honest responses possible from those who choose to respond.
I'm thrilled that you've chosen to take my survey. Thank you for your time, for sharing your experiences, and for your honesty.
PLEASE NOTE: YOU WILL BE ABLE TO EXIT THE SURVEY AND RETURN TO IT AT A LATER TIME IF YOU ARE NOT ABLE TO COMPLETE IT IN ONE SITTING.
If you have questions about my book or this survey, feel free to contact me directly at alagille@alagille.org or cchahn@att.net.
Cindy Luxhoj Hahn
Alaina's Mom
President & CEO, Alagille Syndrome Alliance