• The Charity

    BACKGROUND

    The IDEA League is an international partnership of parents and professionals united in the purpose of creating greater awareness and understanding of Dravet Syndrome and the spectrum of genetic, febrile sodium channel epilepsies.

    The IDEA League was founded by parents in the United States in October, 2005.  This charity has over 600 members from all over the world who share their experiences of living with Dravet Syndrome by using an online forum.  This forum is an incredible source of information and support.

    The IDEA League UK was officially registered as the UK arm of this charity in Feburary 2009. This was achieved by UK members hosting coffee mornings, wine evenings and  the first Chester cycle challenge event in Chester in September 2008.

    It is estimated that the number of families who will need services and support from the IDEA League will increase substantially during the next five years.  Since its formation in 2005, the IDEA League membership has steadily increased each year as more patients receive a proper diagnosis, either by genetic testing or clinical evaluation.  In the UK we had 8 family members in 2006 and today we have over 60.  We know that at least 200 children have been tested for the genetic gene mutation (SCN1A gene) in Glasgow that gives the diagnosis of Dravet Syndrome. There are definitely more families out there and many more that have no doubt slipped through the net over the years that are still undiagnosed. 

    A key issue is early diagnosis and prescription of the correct treatment.  The initial drugs usually prescribed for childhood epilepsy can exacerbate seizures.  Children will typically have normal CT and MRI scans results. All blood and metabolic testing is normal too, passing all milestones up to 2 years of age.  Even with the excellence of the paediatric neurology departments within specialist hospitals such as Alder Hey and Great Ormond Street, diagnosis and treatment protocol is a difficult process. Outside of these centres, many hospitals and their physicians are unaware of the syndrome or what to do about it.

    The IDEA league UK is dedicated to raising awareness and with more resources would be able to reach outside the current centres of excellence to bring families and professionals together to make sure that any child who presents with recurrent seizures in the first year of life is flagged up as potential Dravet Syndrome and is genetically tested immediately to rule it out. 

    We continue to be overwhelmed by the support given to us by both our family members, and the general public.   We are a charity that is run totally by volunteers we can guarantee that every penny donated to us goes towards our primary objectives:- 

    • Raising awareness of Dravet Syndrome in the UK
    • Provision of support and advocacy services to all UK members
    • Education of professionals in the UK
    • Work alongside IDEA League  in our common goal: finding a cure
    • Continued collection of historical data from members for research purposes
    • To expand our affiliation with epilepsy organisations and support groups in the UK
    • To have representation at major epilepsy conferences to further educate professionals and the public

    Through the IDEA League UK we also aim to provide financial assistance to families to obtain a seizure alert monitor or pulse oximeter monitors.  These are currently not funded by the NHS and can cost anything up to £1,000.  These small pieces of equipment can give families that little bit of reassurance at night and offer some normality back to the parents who have had no choice but to have their children sleep with them night after night as they were so fearful of missing a seizure or their child  stopping breathing.  With the fears of SUDEP (sudden unexpected death in epilepsy patients) in every parents mind this little bit of kit can make such a big difference.   We have already managed to fund 6 machines and have loaned these out to the families who have requested one.  We want to purchase additional machines and are looking for sponsors who can assist us with this aim.

    We have a new telephone number for the charity, which has a 24 hour answerphone so please feel free to give us a call and someone will call you back as soon as possible.

     The number is: 07775 347234 or email Marie Baker on marie.b@idea-league.org