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We would like to say thank you to Shinewater primary school, they did a school assembly about epilepsy and the children in reception got to wear purple in support of our daughter

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This is Seren an amazing young lady, she raises awareness because her little brother and her cousin have epilepsy...
This young lady is a true purple hero 

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So I have some news that we would like to share.

As I'm sure some of you are aware one of our wonderful members Sharon Vernon and her lovely mum Yvonne, were doing some fund raising for us during December.

They did tombolas and raffles and selling some bits.

We are so pleased to say that they have made over £1,500.00 for us...what an amazing amount.

They have also helped out at our summer car boot and so kindly had a collection for us when their beloved Dad/husband was taken by epilepsy last year...

So from all of us a massive Thank you to Sharon Vernon and her lovely mum

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Today is #PurpleDay, a day dedicated to raising awareness for epilepsy worldwide.

Despite affecting approximately 625,000 people in the UK, there is still much work to be done to increase understanding and support for those living with this condition. Epilepsy can have a significant impact on a person's education, employment, ability to drive, and mental health, often leading to isolation and anxiety. Tragically, 1,200 people lose their lives to epilepsy each year.

Fortunately, we are lucky to have Epilepsy Sussex locally, who provide valuable advice and support to those affected by epilepsy and their loved ones. As someone who holds this charity close to my heart, I know first hand how crucial their work is.

While I understand that finances may be tight, any contribution you can make would be greatly appreciated. You can support their work through their website at www.epilepsysussex.com

Sorry for having to highlight this.

But we have to Name & Shame HSBC for their unfair & inconsiderate fee charges

How it works HSBC charge EpilepsySussex  £5 a month for maintaining  account?  for what as there is no business manager in branch and no coin collection machine and none of the staff in branch have any business knowledge .

It costs us as a charity 40p for every cheque paid in ( this is called credit fee) it then costs us another 40p for HSBC to process the cheque ( this is called cheques collected)  So for every cheque to put in to our charity account it costs us 80p. So if we put a  £1.00 donation cheque in, the charity gets 20p and HSBC gets 80p.

It costs us 0.40% to put any cash amount into the account, but this still has to be counted and bagged up in the correct amounts and then paid in via the counter.

It costs us 40p to withdraw cash over the counter, also to withdraw cash on top of the 40p it costs us 0.40% to withdraw cash.

It costs us £17 if we do a CHAPS payment over the internet,

It costs us £20 if we do a CHAPS payment to HSBC over the phone

It costs us £30 if we do a CHAPS payment to another bank over the phone

These charges were brought in long after we opened  the account with HSBC, the way our charity constitution is written we have no point but to stay with them at the moment.

A charitable account falls under a business account now in most banks.

We understand that we are going to get charged, which is  still unfair to any small charity but what we don’t get charged for are BACS payments going into the account, PayPal payment going in to the account and payments from things like JustGiving, although PayPal and sites like just giving do take a small fee themselves, to minimis this if donating via PayPal  please make sure you tick the gift box. If setting up a JustGiving page or similar  please use the charity name and charity registration number ( please contact us for our bank details)

We can only use banks that have a branch in our town

So we pay a minimum of £60 a year, which is the cost of an anti suffocation pillow. During covid we were unable to fundraise or bring any money in , but that made no difference to HSBC they still changed us from a charity account to a business account . Although we pay no wages we still have overheads the same as any charity such as liability insurance, keeping the website running etc we try our hardest to keep costs to a minimum so having to pay all these bank charges and having no control over it is we believe disgusting.

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Volunteer for us at events / bucket collections /  plus you will receive a one off EpilepsySussex badge , exclusively for you this is the only way to get one.

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                 Thank you to the members who raised money for us on purple day 2023 

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The team at epilepsySussex would like to say a big thank you to Gradient Consultant Ltd for the very big donation, this will help in funding pillows / id bands

You received a payment of £500.00 GBP from gradientconsultants

To see all the transaction details, please log in to your PayPal account. It may take a few moments for this transaction to appear in your account.

Transaction ID

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Transaction date

28 Jul ‪2022 14‬:11:55 BST

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Description Unit price Qty Amount

EpilepsySussex £500.00 GBP 1 £500.00 GBP

Total: £500.00 GBP

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It has come to our attention that when having the Covid jab some people are faking having a seizure and have said this is a reaction to the jab. As far as we know there is no evidence to suggest that by having the jab you will have a seizure, please ignore these idiots for putting these videos out on social media. if you have any real concerns please even phone NHS Direct or speak to your doctor

News to share with you, we've been working hard behind the scenes over the last few months and have secured some funding £1000 from the John Jackson Charitable Trust , this is essential funding for us to carry on our work .

EpilepsySussex would like to say a big thank you to the John Jackson Charitable Trust , this will help us in providing more pillows / CCTV / key safes / ID bands ect

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 All events have been canceled due to COVID

Yes this does include us,
With
1 bucket collection
4 events and
3 coffee mornings
all cancelled so far

Luckily with our fundraiser the help from the Lions District group  / Waitrose / Member donations we have been scraping by to offer you the equipment that you still need
tough times ahead

  Here, we will discuss the potential health hazards in movies, including flashing lights (which can trigger seizures, migraines, or other issues), and motion sickness.

You can now appeal your PIP decision online:

https://www.gov.uk/appeal-benefit-decision/submit-appeal

Medical cannabis will be available on prescription within a month with 10,000 MS sufferers set to benefit

https://www.dailymail.co.uk/news/article-6249029/Medical-cannabis-available-prescription-month.html?ito=social-facebook

https://www.facebook.com/PurpleDayforEpilepsy/posts/10155872238883505?__tn__=K-R

PURPLE DAY for EPILEPSY

31 August at 03:43 

 

· 

Hi everyone,

I want to make this post so we can all acknowledge the movie After Party, and the effects it can and is having on people.

I recently watched the trailer for this movie, and was so upset by what I seen.

During the trailer alone, it shows a young rapper having a seizure. but instead of showing the proper steps of what to do, in the movie it showed his friends and the audience video taping the seizure and laughing at him, after that event, the video went 'viral' throughout the movie and people started filming themselves doing 'the seizure boy dance' as well as calling the rapper 'seizure boy' and mocking him.

This makes me so sad and so worried.
After years on years of everyone's powerful efforts and hard work to help raise epilepsy awareness and education for us to feel safe and comfortable talking about epilepsy, a movie like this can cause doubt with some people, and that sets all our hard work back steps. 
It can make some of us feel unsure and afraid to talk about our epilepsy, and sadly it can even have some people think it is ok to make fun of epilepsy and people who have it, when its nowhere near okay to do that, what happens in the movie to the rapper is bullying, it is horrible, it is so wrong and it is not ok.

Epilepsy is not a joke, seizures are not a joke. I and many others around the world live with epilepsy everyday, we live with the shadow of not knowing when or where our next seizure will be and we live with knowing that sometimes people die from their epilepsy, it is called SUDEP (Sudden Unexpected Death in Epilepsy) Sometimes we lose friends, jobs and opportunities because of the stigma with epilepsy.
Doesn't sound too funny does it.

Many times over the years we have all witnessed the media portray seizures and epilepsy in the wrong and negative way. With education and awareness we CAN.... NO we WILL change this and help change the way society sees epilepsy so that when an actor, director, producer, host and so on sees something like this in the script, something so wrong, so misleading and so hurtful they will be aware, they will be educated and they will stand up for everyone effected by epilepsy and say no, that's not cool, no that's not right and make a change.

This is another time when we all have to come together, to take a stand, and encourage people to continue to speak out, and that we don't need to be afraid to speak about our Epilepsy and how it effects us. We need to come together and keep sharing our stories so that those who are afraid, those who feel alone, will know that they are not alone and that we are all in this together.

Keep sharing, keep telling your stories, keep saying no to the stigma and keep up the great work everyone, I am so proud of all of you.

Love,
Cassidy Megan 💜🙂
Founder of Purple Day

 

 

 

 

 

 

 

 

 

 

 

 

 

15 January 2018

The Government has rejected its independent PIP reviewer’s recommendation

that PIP claimants to receive their assessment report at the same time as they

receive their decision letter, click link below 

https://www.disabilityrightsuk.org/news/2018/january/government-reject-recommendation-automatically-send-pip-claimants-their-assessment

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

05 May 2018

GPs to stop giving prescriptions for these conditions by the end of May 2018

NHS bodies say from May 31st they will no longer fund items such as probiotics,

vitamins and minerals that are freely available from pharmacies and supermarkets.

Cough mixture, eye drops, laxatives and sun creams are among the products that

will no longer be routinely prescribed.

30 March 2018

CRACKDOWN Paracetamol BANNED on the NHS amid crackdown

on ‘free’ prescriptions for 35 minor conditions

 

16 January 2018

New published guidance on 18 over the counter items which should

not routinely be prescribed in primary care plus a new consultation

on proposals for a further 33 prescription items.

 

The 18 Items which should not be routinely prescribed in primary care:

A Consultation on guidance for CCGs,click link below.

https://www.disabilityrightsuk.org/news/2018/january/nhs

Duke and Duchess of Sussex

We couldn't wish for a nicer two people welcome to our great county of Sussex

 
 
 
Would you like to help us?
We our looking for volunteers in the Sussex area

Are you a good listener,And keen to help
Full information training is given
Interested in giving back to your community, 3-4 hours a month

We can offer you
1st aid training,Epilepsy training, Information training
Uniform provided
Food & drink provided**,Travel cost paid where needed*
*To/From **at our events

Contact shelly 07494 822055

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            This is our campaign poster is 
                           in every Stagecoach office in the UK
                                          in Brighton & hove bus company
                                          in every MP office  in Sussex
                                          in Taxi office in Sussex
                                          on ESUK page
                                          on More Radio
                                          Plus many more 

                                   Please click the link to find out more
                      moreradio.online/2017/04/06/charity-epilepsy-sussex

                                       

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All links have been tested but over time they can become broken , please lets us know if any are not working at EpilepsySussex@gmail.com

Updated April 2024

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