Studies Related to Angelman syndrome – StudyFinder -
Participate in a research study related to Angelman syndrome. Your participation helps advance scientific knowledge and is sometimes rewarded with compensation or services.
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Research Opportunity
Dr Matthew Siu, registrar for Dr Terri Bidwell, Senior Orthopaedic consultant at Starship Children’s hospital, wrote:
“ At present, we are trying to do some research on possible Orthopaedic presentations and/or interventions required for children with Angelman Syndrome. There is virtually no information on this in the world literature, and we feel that it would be a helpful resource for any other children with Angelman in the future.”
Unfortunately, according to an email I recently sent to Dr Sui, he says: “I’m afraid that since that announcement a couple of years ago, I have left the Orthopaedic service. However, the study never really got off the ground, as until your e-mail, I had only had contact from one other family.” Best wishes, Matthew
This seems like such a lost opportunity for research – if there are any other AS families in NZ who are keen to participate in an orthopaedic study, please contact me asap. (Ursula Cranmer: 09-4262313)
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In September 2010, FAST Australia was launched in Brisbane at a cocktail event, following a workshop presentation with Dr Chris Oliver, – Dr ChrisOliver - organised by the Queensland Angelman Association: (QAA) Queensland Angelman Association.
Foundation for Angelman Syndrome Therapeutics AU works at promoting awareness and securing funding for accelerated research into AS: FAST Australia
Ladies seen at the Launch: Mary-Louise Bertram, Meagan Cross, Ursula Cranmer, Jen Kyriacou, Jo Davis
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The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy. The Foundation is committed to assisting individuals living with Angelman Syndrome to realize their full potential and quality of life.
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The Nina Foundation has been founded to aid scientists and professionals financially to do further research on the Angelman syndrome.
http://www.nina-foundation.org/en
