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The Nina Foundation for Angelman Syndrome
Nina Foundation arrow Angelman Syndrome
Angelman Syndrome

Angelman Syndrome is a neurological disorder that a child suffers from birth onwards with the following symptoms:

  1. severe mental retardation
  2. movement or balance disorder (tremulous movement of limbs)
  3. seizures (epilepsy)
  4. sleep disturbance
  5. short attention span
  6. speech impairment, none or minimal use of words
  7. frequent laughter and smiling
  8. happy demeanor

During the last years the interest for this syndrome has risen considerably. The main reason for this is that is was discovered that many children with the symptoms of the Angelman Syndrome are missing a part of the chromosome 15. In addition specific anomalies are measurable in the electroencephalogram.  

The diagnosis of Angelman Syndrome is very seldom discovered in the first months of a child life. Much more common is, that when the child is between 6 and 12 months, it becomes apparent that the child’s development is delayed. Sometimes the parents also notice, that the children laugh a lot. The movements of the upper body can be tremulous and shaky. This makes activities difficult, that involve body balance, as for example learning to crawl or sitting.

With a lot of children during the first years epileptic attacks occur. As toddlers the behaviour is very easy to recognise. They are very quickly excited, continuously moving and hyperactive. Many children always have their fingers, their hands or their toy in their mouth. They often put their tongue out. Also when they are excited they might scream or shout. Some children with the Angelman Syndrome can speak some words, but they are mostly used incorrectly. Some of them learn to walk, some do not. Some children are toilet trained, some not.

It seems that each child is affected slightly differently.  Only little is known about effective therapies and ways to support. From experience it seems that intensive support with physiotherapy and similar therapies has a positive effect. Nevertheless there is no scientific proof of this and this results in parents and medical carers having no firm basis to work on. The Angelman societies across the world are trying to collect as much information as possible. The Nina Foundation wants to help professionalise this initiative by stimulating science, offering financial support and gathering expertise. (for more information please visit http://www.angelman.org).

It is our vision to setup an international knowledge centre in the Netherlands. The Nina Foundation is thankful and happy with your financial support by buying Limoncello di Nina or through donations.

The Nina Foundation is very thankful and happy with your financial support through you buying ‘Limoncello di Nina’ of through donations.  In the name of us all, thank you very much.

For donations please make use of the bank account number 1291.59.220 of the Nina Foundation based in Rotterdam (The Netherlands).

 
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