Dec 17, 2010

Clinical trial for Rett syndrome launched

Study marks the emergence of disease-modifying treatments for autism spectrum disorders
December 16, 2010
Boston, Mass. -- Researchers at Children's Hospital Boston have begun a randomized, placebo-controlled trial to test a potential drug treatment for Rett syndrome, the leading known genetic cause of autism in girls. The drug, mecasermin, a synthetic form of insulin-like growth factor-1 (IGF-1), is already FDA-approved for children with short stature due to IGF-1 deficiency.

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Mar 20, 2010

Karly's CD is ready: In My Own Voice

Read her blog.

Buy the CD.

UK to Netherlands Charity Cycle Ride

A charity cycle is being organised by one of our members in collaboration with Rett UK and Rett NL to as raise money and awareness for Rett syndrome.

Rett syndrome is a rare neurological disorder affecting mainly females and very few males. People with Rett syndrome have profound and multiple physical and learning disabilities and are totally reliant on others for support throughout their lives.

The charity ride is scheduled to take place from 3rd - 6th September starting from UK and riding to Utrecht (Netherlands).

The ride is hoping to attract 100 cyclists (50 from each country) to take part in any of the 3 'legs'. 10 out of the 50 UK cyclists will get the opportunity to do the complete leg, whilst 40 will complete the UK leg only.

Looking set to create great media attention, book your places now for this fantastic charity cycle.

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Feb 13, 2010 - Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on include detail graphing capabilities and are easily sharable with caregivers.

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