Charities

Epilepsy Society
Working for a full life for everyone affected by epilepsy, Epilepsy Society is the UK's leading national medical epilepsy charity. Epilepsy Society conducts world class medical research projects, and we are committed to better understanding epilepsy and improving diagnosis and treatment. We diagnose and treat thousands of people with epilepsy every year. We campaign to raise awareness of epilepsy, and raise vital funds to continue to help all those affected by epilepsy. We do this and much more. With Epilepsy Society, you don’t have to deal with epilepsy alone. Why not find out more about our confidential epilepsy helpline, online epilepsy forum, epilepsy campaigns and awareness raising, and epilepsy information clinics in hospitals? Learn what Epilepsy Society can do for you at www.epilepsysociety.org.uk
SUDEP Action
There are at least three epilepsy-related deaths a day in the UK. The majority are Sudden Unexpected Death in Epilepsy (SUDEP). We care for the bereaved and work with families and professionals to make change. Using research and awareness, we strive to get the answers that will save lives.
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ForJane - Fighting SUDEP fundraising page

Fundraisers: 
Andy Swarbrick, Jane Hemmings, Jessica Smith, Sarah Burrows, bonnie craven-francis, William Whitby, sam clarke, ali clarke, Sam Calcutt, Joanna Bygrave, Hilary Clayton, Arthur Swarbrick, Lesley Swarbrick, Sorcha Hemmings, Keith Hemmings, Brioch Hemmings, Colin McDiarmid, Carly Harris, Dan Lawton, David Burrows, Eva Dutton, Katy Friend,

My page: http://uk.virginmoneygiving.com/team/ForJane

Official blog http://forjane.co.uk/

UPCOMING EVENTS:

  • Yorkshire 3-peaks: (8 entrants) Swarbricks, Thomas & friends 7th July
COMPLETED EVENTS:
  • "CeltMan" Extreme Triathlon: (1 entrant) David Burrows, 23rd June
  • Blenheim Triathlon: (32 entrants) on 9th June
Over half a million people in the UK have epilepsy.  Possibly 500 of those die - each year - after a fit when either heart or breathing stops permanently.  As yet no-one knows exactly why these deaths happen and even worse the risk is often incorrectly assessed by doctors.  Worst of all patients, parents and other close family members are hardly ever told of the risk.

That's us.  In ignorance we lost our beloved Jane, aged 24 on 19th April 2011 suddenly and unexpectedly.  Jane was in good health, and looked after herself.  We had even just spent the weekend with her walking the Wicklow Hills, a sublimely enoyable and relaxing weekend.  After this we came home to England and the next morning awoke to a phone call from the hospital pronouncing our daughter was dead.

Originating in Childhood Absences, until that moment she had lived with a mild form of Epilepsy, reasonably well controlled by a mild dosage of Lamotragine.  The worst we expected, were told to expect, were fits, perhaps increasing in strength, probably controlled by stronger drugs.

The specialists were wrong.  The doctors were wrong.  We were wrong.  Now our daughter is dead.  Even worse Jane is far from unique.  Each year possibly 500 families will get that call announcing their child, their partner is dead.  And that is so very wrong.

By sponsoring us to take part in the Blenheim Triathlon you will help us to work hard to reach our target of £20,000.  The funds so raised will be spent on Sudden Unexpected Death in Epilepsy (SUDEP) projects.

Most of the entrants are listed above.  For a full list of both the teams and individuals taking part on behalf of ForJane see Blenheim Trathlon Page A few of these people are used to triathlons, others like myself are not quite so young and certainly the idea of entering a triathlon is not something I ever envisaged.  To help myself (Andy) I am doing the swimming only, with two extremely good friends doing the running (Colin) and cycling (Sam).  Together, with practice, we feel we can complete the event.

Two other teams are taking part, and again these are people who generally feel triathlons are a foreign world, only to be watched on television.  The second team are Les (swimming) Ali (cycling) and Gail (running). The third team is Katy (swimming), Carly (cycling) and Hilary (running).

However please do not go away thinking that the many individual entrants are going to find it easy.  One good friend Keith, who has known Jane all her life, insists on doing the whole thing and is practicing every night.  His most difficult task will be the running, and he says if he has to walk it he will.

From the same family we have Brioch, who until this event could harldy swim and struggles to stop himself from sinking.

Also amongst our group is (Arthur's) Sam who is a phenomenal swimmer but has hardly every been on a bike and possibly cycled no more than 5 yards.

I could go on, each individual and team member has their challenges.

Funds raised will support Epilepsy Society’s medical research efforts, including those projects looking into the genetic factors which affect responses to treatment. The genetics programme is led by Professor Sanjay Sisodiya and will feature highly in the new Epilepsy Society Research Centre due for completion in Autumn 2012.

Epilepsy Bereaved campaign entirely around improving awareness of the risk of SUDEP.  Historically SUDEP, worldwide, has been so under-reported that no-one really knows the size of the problem.  One way to correct this is to create a register of SUDEP incidents.  The UK leads in this area, but even here reporting is far from sufficient.  We'd like to change that.

Together we're doing this For Jane.  Together we can help stop horrific phone calls being made to another 500 families and friends each year.

Recent donors

30.05.13 A bit more from University of Bristol, School of Earth Science.

06.10.12 Thanks for the lovely Ravelry pattern, wonderful thing to do.

16.08.12 delicious cakes made and sold by students at Wheatley Park School

10.08.12 Year 12 Further Maths class at Wheatley Park School

10.08.12 from staff at Michael & Co hairdressers in Kidlington

10.08.12

10.08.12 from maths students at Wheatley Park School

01.08.12

25.07.12 Thanks to all my friends for their support and belief!

25.07.12 Donations from colleagues at GKN

21.07.12 From friends and colleagues at West Mercia Police

21.07.12 Well done to all who took part in the Yorkshire 3 peaks challenge

21.07.12 Dad gave me the money when he was back in the Uk in June- well done all who took part

19.07.12 Well done bro on the extreme triathlon

18.07.12 Congratulations David (and team) Such an amazing achievement! Hil x

18.07.12 Congratulations to Hilary and all the Blenheim team from her dear Granma xx

18.07.12

10.07.12

10.07.12

10.07.12

10.07.12

10.07.12

10.07.12 I'm impressed!

04.07.12 Well done David. Not just in the event, but for all the training that got you through it. A true accomplishment of a lifetime

03.07.12

£12,609.02

Running total

Target:
£20,000.00
Total raised incl. Gift Aid:
£14,907.76
Total donors:
369
Last donor:
Anonymous
30.05.13  
Offline fundraising:
£1,434.50

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