We have now booked meeting space at: St Nicolas Church Sutcliffe Avenue, Earley Reading, RG6 7JN This meeting will be on 7th September 2021 between 14:00 and 16:00. All are welcome. There will be plenty of room for everyone, the site will be up to covid standards and masks may be worn. hopefully this will be the start of many Face to Face meetings.
Join us for the next in our series of Research Roundtable webinars when we’ll be hearing from the experts and people with lived experience on the topic of epilepsy surgery.
Sometimes epilepsy does not respond to medication and in some cases, surgery may be considered as a promising treatment option with the potential to control seizures. But surgery doesn’t come without risks and challenges. In this webinar, we’ll hear how world-leading research funded by Epilepsy Research UK has helped to improve surgery for people living with epilepsy and one person’s remarkable story of the difference it can make.
The session is open to everyone and will be held at 12pm on Tuesday 31st August. So, whether you are affected by epilepsy, researching epilepsy or just interested to learn more, we hope you can join us.
Epilepsy Research UK webinars are often filled before the event, so register now to avoid disappointment! Register for free here Epilepsy Research UK webinars are often filled before the event, so register now to avoid disappointment!
Our fantastic guest speakers include:
Epilepsy Research UK supporterRachel, who will be discussing her surgery experience, which, thanks to ground-breaking research, has allowed her to live a life free from epilepsy.
Professor Torsten Baldeweg, cognitive neuroscientist based at UCL Great Ormond Street Institute of Child Health, who will explain how his ERUK-funded research has enabled clinicians to better predict cognitive outcomes for children following surgery.
Dr Sjoerd Vos and PhD student Lawrence Binding, who are based in the Centre for Medical Image Computing at UCL, will share how their Epilepsy Research UK Endeavour Project Grant could help reduce language decline as a result of surgery.
There will be a Q&A session with the speakers after the presentations, so please send any questions you may have to our Head of Research, Caoimhe Twohig-Bennett here.de:
Support Dogs is a UK charity which provides and trains Seizure Alert Dogs to support individuals living with epilepsy.
Dogs are trained to provide valuable and reliable warning up to 50 minutes before an oncoming seizure giving their owner time to find safety and assistance.
Their alert gives its owner confidence that they will be warned before any seizure allowing more independence and an ability to live an active life.
Support Dogs’ website includes an Information Pack detailing the criteria an applicant should meet in order to be considered for the service and a link allowing candidates to register their interest in applying for the service;
The applicant should have at least 10 major seizures per month (tonic clonic/atonic or complex partials but not including nocturnal.).
The service would be a partnership between the dog and owner who should have the ability to care for it without the help of another person.
Applicants meeting the criteria for the service are invited to apply to attend an Information Day at the Support Dog’s training centre. These events are held once or twice a year with a limited number of places.
Applicants would have dog handling and home visit assessments.
Support Dog Instructors would assess whether the dog was suitable for the candidate and review the dog’s response prior to any seizures.
After an initial 3-5 day home placement, dog and owner would have a 6month training partnership.
If successful the partnership will qualify as a fully registered Assistance Dog team.
Support Dogs is the only organisation in the UK to provide this service.
The service is provided free of charge. If you have any queries please do contact us at firstname.lastname@example.org or phone 0114 261 7800
We are very lucky to have at the Royal Berkshire Hospital, Neurology Department, access to a specialist Epilepsy Nurse, Jackie Scott. Jackie has agreed we could put her email address on our website so that people living with epilepsy, carers and family members can contact her with any relevant queries you might have relating to your/their condition.
If you have concerns about your condition or questions about epilepsy, Jackie will be happy to answer and help.
One of our members, Rachel, has taken on Epilepsy Action’s 350,000 Steps in July! She is trying to complete 350,000 steps in the month of July, raising money for the charity Epilepsy Action. She is doing this to try and raise more awareness of epilepsy and the impact it can have, as well as push herself in a physical challenge she wouldn’t have been able to do before due to her epilepsy.
The links to her fundraising page on Facebook with updates, as well as a separate justgiving page she has set up for this challenge are below.
50km Walk/Run for Eplilepsy Week in Support of Epilepsy Berkshire 24th May to 30th May
Today I walked 10km with Theresa (my wife) and two good friends who helped with the route and ensured I finished in good time. The weather was lovely to begin with but we did get hailed on halfway round and it was very muddy.
Today we are walking 20km again with Theresa and two other friends who have worked out the route and volunteered to walk with me to ensure I don’t go wrong and am safe. The walk was around the Henley area and we touch on the outskirts of Henley, just the walk took most of the day and we did stop for a picnic which was needed after the first 10km. The weather was not too hot, just right for walking. We actually walked 25km so pretty pleased with that, half the distance needed. With yesterday I am now well over half way to target. I have had some great support so far with £200 raised so thank you all who have supported me.
Today I ran 5km, which I have not done for a while, I did this on my own, but Theresa knew the route and had her tracker on so she could see I was still moving. The weather was pretty chilly today, but was very hot when I finished.
Today has been a rest day although I noticed that I still managed to walk nearly 10km
Today was my second 5km run same route and believe or not slightly quicker (not telling you the actual time) so quite pleased. I then walked a gentle 5km with Theresa later in the day. The total raised is now above £400 so thank you again all those who have supported me. I am hoping we will reach my target of £500.00.
Pretty much took it easy today but still seemed to walk almost 5km.
Out with grandchildren today in Henley along the Thames, we all walked 10km, so I have definitely walked/run over the 50km required. Lovely day and it was great to be with some of the family to finish the week off.
Footnote: The money raised is now over £600.00 which is fantastic. Thank you so much for all those who supported me.
Epilepsy Week is May 24th – 28th and marks the national day when epilepsy charities aim to increase awareness and knowledge of this condition and raise funds. Epilepsy Berkshire is a small charity, founded in 2017 to help foster a greater understanding of epilepsy locally, to support those living with epilepsy and to raise funds on their behalf.
Our plans for Epilepsy Week are restricted, due to Covid. However, we do have a Zoom session scheduled on Monday 24th March at 7.30 PM. The email address to obtain the Zoom link is email@example.com
We are also fund-raising; we are asking:
Do You Know Anyone with Epilepsy?
…or have seen an epileptic seizure?
Perhaps, then you may understand how limiting this condition is. Well, next week is Epilepsy Week and we at Epilepsy Berkshire are trying to raise funds, to help give better support to those living with this condition.
Our founder and treasurer Peter Clunie says…
‘Hello, We’re raising £500 to Support Epilepsy Berkshire. I am running and walking 50km during Epilepsy week 24th to 30th. Please donate to my JustGiving Crowdfunding Page and help make it happen’:
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