Category Archives: news

Group Meeting Dates from January to April 2019

Hello, to keep you updated, here’s the dates of our next four Group meetings, for 2019. All meetings start at 7PM, and end by 9PM.

  • 8th January, 2019
  • 5th February, 2019
  • 5th March, 2019
  • 2nd April, 2019

Our meeting schedule can be added to your online diary, just click this link : 

https://calendar.google.com/calendar?cid=YnJpc3RvbGVwaWxlcHN5QGdtYWlsLmNvbQ

 

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Facebook Live – January 16th 2019 : “A Mind Unraveled” with Kurt Eichenwald

Watch this Facebook Live – on Wednesday, January 16, 2019, at 8:00 pm. ET

The epilepsy journey can be a traumatic experience, especially when people are not given correct information or do not see an epilepsy specialist. Myths, misbeliefs, and lack of knowledge all contribute to the misperceptions and negative life experiences faced by so many people with epilepsy.

Kurt Eichenwald is a national award-winning journalist and New York Times bestselling author. He will share his epilepsy journey by talking about his book, A Mind Unraveled, on a Facebook Live on January 16 at 8:00 p.m. ET. The stories about his life may resonate with you or someone you know. Others may be surprised by the persistent challenges and difficulties obtaining proper epilepsy care in this day and age.

Watch online, click the link : www.facebook.com/EpilepsyFondationOfAmerica

This broadcast will also be archived on the facebook page to watch again if you miss it.

Join the Facebook Live on January 16 for a chance to get a free copy of A Mind Unraveled.

  • During the Facebook Live, you will get instructions on how to obtain a copy of the book.
  • A limited quantity of books is available so make sure you tune in to get one!

This program is supported by NeuroPace, Inc. Please note the contact information shared to receive a copy of A Mind Unraveled by Kurt Eichenwald will not be added to any email or mailing list from the Epilepsy Foundation or NeuroPace, Inc. You can choose to receive information from one or both organizations by checking the appropriate box when entering to win a free copy.

Notes for Meeting: 2nd October 2018

Here are some notes and links to what we are talking about on this month’s Bristol #Epilepsy Support Group meeting:

DWP STOP accepting new Universal Credit claims from people on PIP and revert back to legacy system

https://universalcreditsuffer.com/2018/09/30/dwp-stop-accepting-new-universal-credit-claims-from-people-on-pip-and-revert-back-to-legacy-system/

Epilepsy Society Conference 2018 – report back

https://www.epilepsysociety.org.uk/annual-conference-1

Epilepsy Foundation of America & Talk About It: talk on Cannabis and CBD

Fundraising Gig for Epilepsy in Bristol – Aug 10, 2018

36522930_1282564661879126_8313714877143187456_nJoin AFO Audio and friends, for an exciting fundraising gig for Epilepsy Society to be held in Bristol on FRIDAY 10TH AUGUST, 2018.

Time: 7PM

Address: The White Hart Pub, 84 Bedminster Parade, Bedminster, Bristol , BS3 4HL

Featuring several bands : Hannah Jane, Coldwater, Rokyoot, Place of Kings, Zendium Moon and Ellie Moonshine & The Prohibition Band.

Suggested Donation Entry : £5 (or more)

More Information from : https://www.facebook.com/afo.audio

#EpilepsyDay 2018

Today it’s International #EpilepsyDay ( 12 February 2018).

ibe-small-logo

International Epilepsy Day, a joint initiative created by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), is a global event celebrated annually on the 2nd Monday of February, to promote awareness on epilepsy right around the world. With IBE and ILAE representation in more than 120 countries, this is a powerful opportunity to highlight the problems faced by people with epilepsy, their families and carers, in every region of the world.

This is a day for everyone and every organisation:-

  • no matter where you are
  • no matter how small your group or how wide your geographical spread
  • no matter whether your focus is on the medical or on the social aspects of the disease

While International Epilepsy Day celebrations vary from region to region, with cultural, geographical and climatic circumstances all impacting on activities, the common thread is the desire to highlight epilepsy and to bring attention to the need for better awareness and understanding, appropriate legislation, improved diagnosis and treatment services, and increased research in order to better the lives of all those affected by epilepsy.

This is your day, to celebrate how you will. Any activity, no matter how small, when combined with the efforts of individuals, groups and associations around the world, will collectively impact on how epilepsy is viewed. What you do to mark the day, in your own way, with the resources available to you, will make a difference to the 65 million people in the world who are living with epilepsy.

VISIT : https://epilepsy.org/

 

 

Blue Badge Gov Consultation 2018

People with hidden disabilities could enjoy new freedom with blue badge changes. Consultation expanding the Blue Badge criteria released.

People with hidden disabilities could soon have greater access to blue badges under new plans from Transport Minister Jesse Norman today (21 January 2018).

The proposals, which would herald the most significant changes since the blue badge was introduced in 1970, would help remove barriers to travel for people with conditions such as dementia and autism, allowing them better access to work, shops and amenities. This is part of the drive for greater parity between the treatment of physical and mental health conditions.

Currently, about 2.4 million disabled people in England have a blue badge, allowing them to park on roads without charge and normally without time limit. Around 75% of blue badge holders say they would go out less often if they didn’t have one.

Transport Minister Jesse Norman said:

Blue badges give people with disabilities the freedom to get jobs, see friends or go to the shops with as much ease as possible.

We want to try to extend this to people with invisible disabilities, so they can enjoy the freedom to get out and about, where and when they want.

The changes could also see a variety of healthcare professionals, who are better placed to identify if mental health causes mobility issues, carry out assessments to determine if a blue badge should be given.

Sarah Lambert, Head of Policy at the National Autistic Society, said:

The National Autistic Society welcomes this government proposal. It could mean that many more autistic people will qualify for a Blue Badge, which can be a lifeline.

There are an estimated 700,000 autistic people in the UK and whilst every person on the autism spectrum is different, for some, not being able to park in a predictable place close to a destination can cause a great deal of anxiety and put their safety at risk. Some autistic people can experience too much information from the environment around them on public transport, while other autistic people might not be aware of dangers on the road.

However, current Blue Badge rules mean that all-too-often autistic people don’t qualify. The National Autistic Society has raised this issue with government over recent years and we are pleased to see they have listened to the concerns of autistic people and their families. We hope the government will make this important change and we look forward to working with them to make sure that autistic people and their families benefit.

Sarah’s Epilepsy Fundraising Story

Sarah Reid – is an inspiration and a member of the Bristol Epilepsy Support Group, in Bristol, England.

In spite of undergoing surgery for left temporal lobe epilepsy this year at Southmead Hospital, Bristol, Sarah has still managed to fundraise relentlessly for the five charities closest to her heart: Epilepsy Society, Young Epilepsy, Epilepsy Action, Young Carers and Mothers for Mothers.

‘Fundraising is a way of giving back,’ said Sarah. ‘Epilepsy Society and the other four charities have always been there for me when I have needed them. They have supported me in the lead up to my surgery, they have been there for me when I have been having a down day or when I have been struggling with my seizures or with employment issues.

Sarah fund raises for the #epilepsy group in Bristol, she says that…

It was rewarding giving a cheque last night  (February 6th, 2018) for over £40 to Bristol Epilepsy Support Group!

It was lovely giving 107 epilepsy information packs with laylas book epilepsy book for kid’s inside with 1st aid leaflets young epilepsy sent and young carers leaflets too. With information as well as stickers and balloons to put inside to help making the information packs exciting and educational , raising epilepsy awareness and money for epilepsy charities.

When I was at school teachers told me off for daydreaming when really I was having a seizure. I hope that raising epilepsy awareness in schools will stop what happened to me happening to anyone else.

Sarah also says..

A big thank you to staff and customers at downend co op for helping me to raise the money and to young epilepsy and young carers who kindly donated information leaflets and stickers and balloons. 

Now my next goal is to raise another £700 to send enough information packs for schools in Bristol.   Then my daughters Layla’s book and information packs will be in all South Gloucestershire schools and Bristol schools raising epilepsy awareness.  The cheque from the profit from her book will be sent to the Epilepsy Society in the next few months.

I am at Downend Co-op in Bristol, every week raising money for 7 charities close to my heart and donating Layla’s book EPILEPSY BOOK FOR KID’S to schools, epilepsy charities, to hospitals and to families who need them. 

You can buy the book on AMAZON here : https://www.amazon.co.uk/Epilepsy-Book-Kids-Layla-Reid/dp/1842890190 , or at Waterstones Bookstore in the UK here : https://www.waterstones.com/book/epilepsy-book-for-kids/layla-reid/9781842890196

Sarah continues..

Recently, I was in contact with a lady called Sarah from South Gloucestershire council who found the best was to get my daughter’s epilepsy book to schools was through the school’s nurse’s. I took all the epilepsy information packs to the kingswood hub where the school nurse’s loved them and thought they were a great way to raise epilepsy awareness and money in schools!.