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FIND – Further Inform Neurogenetic Disorders
The Cerebra Centre for Neurodevelopmental Disorders is led by Professor Chris Oliver at the University of Birmingham. The aim of the Centre is to conduct high quality research with children and adults with neurodevelopmental disorders. The Centre focuses on researching behaviour, cognition and emotions. The Cerebra Centre team has developed a novel online resource to improve the exchange of knowledge about rare genetic syndromes. The purpose of this website is to summarise research studies using a range of interactive and engaging formats, for example, parent stories, professional talking heads, bite-sized written information and an interactive database. The website is called FIND, which stands for ‘Further Inform Neurogenetic Disorders’ and has…
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Angel Art
By Darren Humphries Some people like to collect stamps, coins and my late mother used to collect mugs. I used to collect stamps when I was younger, and some of those who know me would say I like to collect a few things, but my most prized collection is my Angel Ink Collection. Growing up I didn’t know many people with tattoos, so to have a tattoo would be something foreign to me. On 7 February 2011 we would be celebrating my son Elijah’s 10th birthday. In our family the 10th birthday was an important one. I recall that my two sisters and I were given a wristwatch, which has…
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Angels in Action March-April 2015
Luke and Zach are identical twins (UBE3A) who will be 8 in May and are the youngest of six boys.We live in a little coastal village called Downings, Co. Donegal, Ireland. Living in a small rural community definitely has its advantages as the support that we get from family and friends cannot be bought. My family are involved in the hospitality trade, so everyone knows the boys and they are accordingly acknowledged wherever they go. It’s lovely to walk in to the hotel and there’s high 5’s going on all around- little celebrities in their own right! The twins have very different personalities with Luke being the more serious…
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Aromatherapy and Angels March-April 2015
By Shari Caspert, Mom of 18- year old Matthew There has been a lot of news about Essential oils and how they may help you with many health issues. This is very exciting, yet confusing at the same time. We have been using Essential Oils for the past 4 years in our home. We are always looking for options to help our son Matthew (age 18 with AS) to help him with sleep, behavior, anxiety, stress, focus, digestion and to keep his muscles strong and pain free. After much trial and research we have come to realize that his body is constantly changing and that we may need different strategies to…
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Angelman House – Quebec, Canada
By Charles de Broin Société du syndrome d’Angelman The idea of offering a respite home for Angelman children was first conceived by Paolo Di Vito, Sophie Dubé and a handful of parents and friends who were willing to dedicate time and energy to the cause. The idea was to offer a safe and welcome home away from home to children with Angelman Syndrome. The Foundation du Syndrome d’Angelman ( angelman.ca ) obtained its letters patent in May of 2005 creating a non profit corporation for people touched by Angelman Syndrome, to promote research on the syndrome, to offer a stimulating environment for individuals afflicted with the syndrome and provide support to those nearest to…
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Family day at the zoo – Angelman Syndrome Belgium
Family Day at the Zoo in Antwerp By Inge, (Mum to Merle) We were hesitating to go or not to go to the Zoo, an activity organized in September this past year by the Angelman Syndrome of Belgium. From Poperinge, our hometown, it is a travel of about 2h 40 min by train which is quite a long time for Merle, our Angelman child. She can be quite unpredictable. Anyway, we decided to go for the adventure. ☺ Finally, we arrived somewhat later than the other families. In the morning we explored the park and during our walk through the park we met several other families with an Angelman child.…
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Angelman Research – Baylor College of Medicine Research Discovers Potential Therapeutic for Angelman Syndrome
Baylor College of Medicine Research Discovers Potential Therapeutic for Angelman Syndrome ASF-funded research, published in Nature, proves paternal Ube3a can be activated and AS symptoms can be recovered. Dr. Art Beaudet Promising Angelman syndrome research continues to move closer toward potential clinical trials, as announced in December in a paper in Nature by Dr. Art Beaudet and his research team at Baylor College of Medicine (BCM). More research will be conducted but pre-clinical trials in AS mice have proven that the paternal copy of Ube3a can be activated and that AS symptoms can be recovered, though more testing is needed to determine exactly how the cognitive deficits associated with AS…
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Editor’s Letter January-February 2015
Welcome to 2015! A new year and new beginnings. I am an optimist and I believe in infinite possibilities. Every day is a fresh start to get one step closer to your goals, but entering into the new year is the time to create new goals and determine a plan of action. This time of year is so special because I use it to plan personal goals and family goals. I sat down with my oldest son and helped him set his goals for the year. I also write down the goals I have for Nathan. I include any products or therapy services I want him to start and skills…
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My Sister has Angelman Syndrome – Documentary by a New Zealand Film Student.
This documentary was created by Lucy, sister to Alice. Alice has Angelman Syndrome. “My name is Lucy Holyoake, I’m from Wellington in New Zealand. I’m a film student at University and I have a 17 year old sister with Angelman Syndrome. I would just like to share my short documentary film I made about my sister, Alice Holyoake. I would love for families with Angelmans kids to be able to see it, as I think they would be very interested.”
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International Angelman Day 2015
