Sue Edberg

William was my first grandchild and we were all so very excited for his birth. At about one year old I knew William was not developing as steadily as my son’s did in their childhood, I ignored the signs that he may not be a typical child because I thought he was so amazing, his laughter was so endearing, I thought he was just especially talented. When we learned that he had Angelman syndrome we felt sorry for ourselves and for William’s parents for the next three days – however, we quickly learned about FAST and that a human clinical trial for a cure was going to begin in just a month. Our sadness turned to joy and optimism as we learned that William may one day be able to talk to us. We started our fundraising efforts for a cure in the spring of 2020. Since that time, our friends and family (William’s Village) have raised nearly $1 million for a cure for AS. We aren’t stopping until William can tell us, in his own words, what he needs, where he wants to go and how he wants to get there.