Dravet syndrome community

Dravet Syndrome is one of the most catastrophic epilepsies and is a rare neurological condition causing severe, difficult to control seizures alongside developmental delay. 

Braxton's Story for Piper's Song

Written by Dravet Syndrome Foundation, published 5 months ago.

 

A family's story of their journey with Dravet syndrome created by the Ried family for the Dravet Syndrome Foundation.

Written by Dravet Syndrome Foundation, published 5 months ago.

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Dravet syndrome Recent Activity

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    Molecular Biology Project Center for Molecular Biology Severo Ochoa
    topic, published 14 days ago

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    When reading the following article on cystic fibrosis, we can have an idea of the reasons why the Dravet Syndrome Foundation is going to develop the CBMSO Molecular Biology Project.

    We understand that the genetic therapy approach is today probably the most solving strategy, but we do not discar...

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    Melatonin
    topic, published 17 days ago

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    Answer to a parent requesting information about whether Melatonin had been studied at the Dravet (29/05/2012)

    What is been referred to in the Dravet articles was the usage of melatonin in children with sleep destructuring or bad sleep. The lowest dose was 3 mg. Some authors also recommended it ...

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    Dravet Syndrome Foundation Spain Leaflet (ES)
    document, published about 1 month ago

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    in Spanish language

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    Short distance, but giant leap
    news, published about 1 month ago

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    "We purchased a mattress and it's very sensitive and detects when she's having seizures and it can pick up on [signs] when her heart stops. I have a pager in my room and it beeps if she's having a seizure."

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    Dravet Syndrome Information in Italian
    document, published 2 months ago

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    From the Italian patient group

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    Call for stories
    topic, published 2 months ago

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    There are still many people living in all regions of the world that have yet to be properly diagnosed with Dravet syndrome. We are reaching out to people who wish to share their stories of diagnosis and life experience. Stories can be submitted anonymously. Story submissions will assist others in...

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    Medical facts, fast
    news, published 3 months ago

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    A.J. was ultimately diagnosed with a rare genetic disorder known as Dravet Syndrome, caused by a mutation in the SCN1A gene, which normally forms sodium channels in the neurons of the brain. Sodium channels help generate action potentials, electrical signals that travel along neurons and allow...

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    Parents of epilepsy boy put hope in new centre
    news, published 4 months ago

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    Muir was eventually diagnosed with severe myoclonic epilepsy, also known as Dravet’s Syndrome, and the news meant the family’s hopes for him – that he would have a normal life – were dashed.

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    Hi!
    topic, published 4 months ago

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    I am mom to Melorah Grace (age 11). My husband and I are founding members (john is a founding board member) of dravet.org, formally the IDEA League. It was the first non-profit Dravet group. Melorah wasn't diagnosed until Dr. Dravet saw her at the first Dravet conference in August of 2006. D...

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    Hello,
    topic, published 4 months ago

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    My name is Mary Anne Meskis. I am the Vice-President of the Dravet Syndrome Foundation based in the US, www.dravetfoundation.org. My youngest son, Elliot has Dravet syndrome.

    I am happy to share our experience in living with Dravet syndrome and look forward to speaking with other families. ...