STARS Syncope Trust & Reflex anoxic Seizures

STARS Syncope Trust & Reflex anoxic Seizures

Charity information

STARS Syncope Trust & Reflex anoxic Seizures

STARS (originally known as The Reflex Anoxic Seizure Information and Support Group) was founded by Mrs Trudie Lobban after her own daughter was diagnosed with Reflex Anoxic Seizures in 1993. It had taken over 3 years to gain a correct diagnosis and during that time the Lobban family witnessed their young daughter ‘dying’ several times per day. The impact Reflex Anoxic Seizure (RAS) had on their family was devastating. Eventually, after travelling from Stratford-upon-Avon to Scotland, a diagnosis was obtained. However, as there was no treatment for the condition at that time, the Paediatric Neurologist asked Mrs Lobban if she would found a parent/ patient support group with the aim to offer help and support to others going through the same as her own family. It was expected that she may receive 10 or 12 enquiries per year. The charity now receives over 1500 new enquiries each year, and 145,000 ‘hits’ per month to the STARS web site (www. Stars. Org. Uk). As well as these enquiries and subsequent follow up calls, medical practitioners regularly make contact with STARS to seek information and advice. Mrs Lobban is now world recognised as an expert on this and associated conditions and spends much of her time addressing medical meetings to raise awareness and understanding. However the main aim still remains to give support and information to individuals and families living with these conditions.

The Paediatric Neurologist, Professor JBP Stephenson first named the condition in 1978 and has subsequently shown his support of the charity and Mrs Lobban by becoming the first official patron when it officially registered I January 2001.

The Strategic Aims for the STARS are:
o To alleviate the effects of and provide support and information on, syncopes and reflex anoxic seizures, to those in distress as a result of these seizures, whether suffered by themselves or as a member of the family group.
o To advance the education of the medical profession and the general public on the subject of syncopes and reflex anoxic seizures and its implications for the individual and family.
o To promote research into the management of syncopes and reflex anoxic seizures and to publish the useful results thereof and to support organisations promoting research into syncopes and reflex anoxic seizures.

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