Autumn flu and Prader Willi Syndrome

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And autumn is here again… with all the bacterias and viruses..and dump weather here in England for sure. When autumn starts here in England we automatically start to worry for Stony again. He is catching everything much easier and even a tiny flue makes him devastated and knocked out for at least a week!
PWS children also have weakened immune system, tight airways and restrictive ventilatory impairment and respiratory muscle weakness. So when Stony catches a flu it makes him really bad and makes us so worried. Read More

Prader-Willi Syndrome Patients in a Long-Term Extension to Clinical Trial PC025

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Good news every one! We are almost there. Essentialis Announces the Dosing of the First Prader-Willi Syndrome Patients in a Long-Term Extension to Clinical Trial PC025.
Patients who completed the first two phases of clinical study PC025 are currently being enrolled in a 6-month open label extension.  The objective of the extension is to document the long-term therapeutic benefits of DCCR, Essentialis’ lead drug, on hyperphagia, body fat, lean body mass, aggressive, threatening and destructive behaviors and on stamina. Read More

Carrying a special object everywhere they go

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Stony has his special object and this is a 30 inches long soft English Sheep dog called “Fluffy. He has been carrying Fluffy with him everywhere for 2-3 years already. The doggy called “Fluffy”,  since it is a really fluffy-shaggy soft toy dog.

He is really big 🙂 but he does not mind, he carries him everywhere we go. 

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Bugs cause fear, see behind

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During the summer holiday we have also scheduled the forest walking among so many outside other activities and programs. Stony loves forest very much, so we have taken lot’s of his playmobil figurines and set in a a nice place in the middle of the forest.
After half an hour I have realised Stony is getting somehow frustrated kind of falling out of himself ( as I call this phenomena) he was getting very shady and confused.

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How smile helps

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Did you know that when you move your facial muscles to express emotions or to speak, the movements sparks a signal to the heart to regulate itself to match the face’s expression. If the facial movement is a smile, the brain recognizes a safe situation and inhibits or puts the break on fight-flight. The heart and organs can now operate in a slow, well-regulated manner. It a threat is perceived, the fight-flight system is quickly engaged, the face expresses shock, and social exchange releases the fight-flight break. The heart pumps faster, and organs are shut down to allow energy to move the arms and legs. Read More