-
Angels in Action – Krista’s story
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with Angelman Syndrome. Written by the families, we join in celebrating the abilities no matter how big or small. We believe it is important to inspire everyone with these real stories of our endearingly termed ‘Angels in Action’. Possibilities abound when we have a vision! By Karen VanPuyenbroeck of Illinois Angel Mom to Krista 10 years old, AS UPD When I was asked by our Editor In Chief, Lizzie Sordia, to write a piece about Krista’s abilities for this section; I asked myself, what were my…
-
LGIT Testimonial – Anna’s story
LGIT Testimonial – Anna had a terrible start. She could not drink and because of this she was hospitalized 3 weeks after her birth. They soon discovered she had epilepsy and here in The Netherlands I understood, almost all babies with epilepsy get Phenobarbital. Because I was not satisfied with the care Anna received we decided to move to another hospital. So almost 6 months later, the new neurologist advised us to stop with Phenobarbital and start with Keppra. And it was a good choice. When Anna was 1 year old she finally got diagnosed: Angelman Syndrome. With Keppra, we succeeded to keep her seizure free for almost 2 years.…
-
The Power of Cooking
The Power of Cooking Angelman syndrome, ketogenic diets and LGIT By Sybille Kraft Bellamy One of the best ways to naturally help our angels is by giving them a nutritious healthy diet. Our angels are fragile and very sensitive to their environment. Little things, minor changes can trigger dramatic consequences. Each child is unique, each parent is special. We have to rediscover the power of food. Therapeutic diets like ketogenic diets have been used for years to help control epilepsy. Today, the LGIT (Low Glycemic Index Treatment) is one of the easiest diets to give to our angels. It is one of the weapons we can use to protect…
-
AS Research – by Ed Weeber, PhD.
Interested in what research has been published about AS? Dr. Ed Weeber will tell us how we can search for information and some of the latest research happening around the globe. How can you get published scientific articles concerning Angelman syndrome research? By accessing the free data base called PubMed (www.pubmed.gov). This valuable resource is developed and maintained by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM) and contains more than 20 million references to scientific articles. The search function allows single or multiple terms to narrow the number of “hits”. In addition, you can search for authors in order to find all of…
-
Words of Wisdom from Parents
“The words of advice I offer newly diagnosed families today starts out a little different than it did a few years ago. In the past I might have suggested parents not jump into researching the syndrome and to ignore the majority of what has been written by “experts”. Today there is a multitude of valuable information available and it is written by the true experts, the parents of the Angelman Syndrome Community. Do your research. Read all you can. Join the online support groups and ask questions. Find local families and meet their families. You are going to see a wide variety of personalities, abilities, opinions and you are going…
-
Letter from the Editor
It all began with a thought; a series of events like International Angelman Day and meeting other passionate parents. After receiving my son’s diagnosis, I immediately developed this strong desire to learn as much as I could about his genetic condition. Since there is currently no ‘treatment’ available, I asked myself; “what can I do to help my son today”? As I learned of the advancements in research and the wonderful work that the foundations do across the globe, I was filled with gratitude and hope. But, my time is limited, as yours is, I wondered how I could stay current with this information? Inspired by International Angelman Day, I…
-
Our Journey Begins Here
The Journey Begins Here Together, we are all on a journey A journey that is the same and different There is no right or wrong way We span across the globe There is so much we can learn from one another We can share our experiences; of laughter, joy, failure and triumph Together, our global community will become connected like never before And we will make great progress Improve the lives of our families And maybe… just maybe… Take part in the ultimate solution in finding the cure! ~Lizzie Sordia Editor in Chief
