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Live Webcast – END EPILEPSY

Join actor Greg Grunberg and a galaxy of stars for the live broadcast of END EPILEPSY ® Live! – from Hollywood, Los Angeles on Saturday 9th November

  • When: Saturday, November 9, 2019
  • Time : 22:00 GMT to 2AM ( 2:00-6:00 p.m. PST *USA )
  • Where: Broadcast live from Hollywood, Los Angeles, California
  • Watch LIVE on YOUTUBE HERE : https://www.youtube.com/watch?v=-lL6oy40LY0
  • Also Streamed Live online at: epilepsy.com/live, talkaboutit.org, and CBSlocal.com/EndEpilepsy
  • Why: To raise awareness and funds to support the more than 3.4 million people in the United States, and 66 Million people around the Earth, living with Epilepsy, Seizures and other connected conditions such as Autism and genetic syndromes.

How to DONATE to the END EPILEPSY event

Donate button

You can Donate to the “END EPILEPSY Live!” here : https://donate.epilepsy.com/donate

All funding goes directly to the Epilepsy Foundation of America, and on to local chapters to help local patients and families in the USA with support of all kinds.

About the Event

“END EPILEPSY Live!” will be hosted by Epilepsy Foundation spokesperson and celebrity Greg Grunberg (“Star Wars: The Rise of Skywalker,” “Alias,” and “Heroes”). Greg’s son Jake, is living with epilepsy, so ending epilepsy, and the challenges that come with it, is personal for Greg and his family.

It’s what motivated him to start the website and podcast “Talk About It!

On Saturday November 9th, he is gathering his celebrity friends, actors, great bands and other special guests to create a fun, fundraising, live webcast event, where you will be entertained as well as be educated and learn about epilepsy and seizures.

A message from actor and host Greg Grunberg about the END EPILEPSY Live webcast

Sam Downie, from the Bristol Epilepsy Support Group and Actor with Epilepsy, has already filmed a short film piece to camera for the event – where Sam talks about how he as an actor lives with Epilepsy and Autism, and how seizures have impacted his life, as a working Actor, Character Actor and Voice, Presenter and BAFTA nominated Filmmaker – so join the live webcast and look out for Sam’s appearance amongst the “galaxy of stars” joining Greg and friends in Hollywood, Los Angeles.

A message from film director JJ Abrams

Hollywood director, JJ Abrams wants you to talk about Epilepsy. He want’s the film and tv industry to talk about seizures, he want’s YOU to know what to do ! But, can you spread and share his message ?

Are YOU either : #TeamTrek Or #TeamWars

As one of a few actors who is recognisable (with no heavy make-up) in the recent “Stars Wars” and “Star Trek” movie franchises, Greg Grunberg has a question for YOUAre you #TeamTrek or #TeamWars? Here’s what to do, and how you can take part:

  1. Take a photo or do a short video clip of yourself
  2. Post photo or video of you, on Twitter or Instagram and use the hashtags #TeamTrek or #TeamWars.
  3. In your video or photo, say why you picked your team hashtag.
  4. Also add the hashtag #EndEpilepsyLIVE to your Twitter or Instagram post.
  5. and.. post the tweet or post and make sure it’s shared to raise awareness about Epilepsy and seizures

Mention #TeamWars or #TeamTrek and #EndEpilepsyLIVE on Twitter / Instagram , and Greg Grunberg and team, might give you a shout out during the live broadcast as well as on his Twitter ( follow @GregGrunberg ) and we might play your selfie video on #EndEpilepsyLIVE too.

Even stars from Star Trek support the END EPILEPSY Live webcast

Here’s actors LeVar Burton (Lieutenant Commander Geordi La Forge – ST-TNG) ( and Brent Spiner (Commander Data – ST-TNG ), talking about Epilepsy.

Show Your Support

Our mission is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

We connect people to treatment, support and resources; lead advocacy efforts and fight discrimination; fund innovative research and the training of specialists; and educate the public about epilepsy and seizure first aid.

DONATE TODAY!

Join The Conversation On Social Media With Hashtag #EndEpilepsyLIVE

Celebrities And Special Guests Asked To Appear

* Link to IMBb profile

About Epilepsy

According to the World Health Organization, epilepsy is the most common serious brain disorder worldwide with no age, racial, social class, national or geographic boundaries. The U.S. Centers for Disease Control & Prevention (CDC) estimates that 3.4 million people in the United States are affected by epilepsy. It is the underlying tendency of the brain to produce seizures which are sudden abnormal bursts of electrical energy that disrupt brain functions.

About The Epilepsy Foundation

With a network of nearly 50 partners throughout the United States, the Epilepsy Foundation is leading the fight to END EPILEPSY. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding $68.7 million for epilepsy research and supporting 3,091 epilepsy investigators and specialists in their early careers. Over the past 18 years, in partnership with the CDC, the Epilepsy Foundation has helped to improve access to care for people with epilepsy, expanded its digital reach and online resources in homes across the country, and trained more than 500,000 school and community personnel in how to recognize seizures and administer seizure first aid. The Foundation has also assisted more than 123,470 people through its 24/7 Helpline in the past five years, and continues to focus on innovation, new therapies, community services, advocacy and education as key priorities. To learn more visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook and Twitter. Authored By: Epilepsy Foundation Communications Team . October 2019

Categories
Action Drug News epilepsy Health news

NEWS ALERT 🚨 : Some AED Medications Recalled

Please visit : https://www.gov.uk/drug-device-alerts/fmd-alert-class-2-mdr-123-05-19?cachebust=1561646198#Product-table

Certain batches of three medicines for Parkinson’s, epilepsy and blood clots are being recalled in the UK, and patients are being asked to arrange a new prescription via their GP.

The affected prescription-only medicines are :

  • Neupro
  • Vimpat
  • Clexane

with a B & S Healthcare label, the UK’s medicine regulator said.

VIMPAT 100MG TABS 1 X 56 254265 01P0324 30-APR-23 11-JAN-19
VIMPAT 100MG TABS 1 X 56 255279 02P1067 30-APR-23 19-MAR-19
VIMPAT 100MG TABS 1 X 56 258582 02P0892 30-JUN-23 25-MAR-19
VIMPAT 100MG TABS 1 X 56 254265 02P0893 30-APR-23

The drugs may not have been stored correctly before reaching patients.

But the risk of the drugs not working properly is very low, it added.

DOWNLOAD THIS LETTER : https://assets.publishing.service.gov.uk/media/5d1332ffe5274a069552c1ed/EL__19_A15_final_.pdf

The Medicines and Healthcare products Regulatory Agency (MHRA) said the recall was precautionary and patients should continue taking their medicine.

Once they have a new prescription, patients should then return the affected batches to their pharmacist.

The medicines are:

  • Clexane 8000iu Injection 0.8ml
  • Neupro 4mg/24 hr patches
  • Vimpat 100mg tablets

The batches of medicines affected are listed on the MHRA website.

There is no evidence that the medicines, which are in Italian packaging, were tampered with, en route from Italy to the UK.

More drugs recalled from pharmacies

A number of other medicines are being recalled from pharmacies as a precaution.

They include certain drugs for psoriasis, high cholesterol and chronic obstructive pulmonary disease – also listed online by the MHRA.

Pharmacies are being asked to check for affected packs in B & S Healthcare labelling, and return them to their supplier.

If patients have any questions, they should speak to their GP or pharmacist, the MHRA said.

Dr Samantha Atkinson, director of the MHRA’s Inspection, Enforcement and Standards Division, said: “Making sure the medicines people and their families take are acceptably safe and effective is the primary role of the MHRA and is our highest priority.

“When we are made aware of potential risks to the security of the supply chain, the MHRA takes action to protect the public.”

The recall is taking place as part of a continuing MHRA investigation.

Categories
epilepsy events Group News meetings 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

 

Categories
Campaigns epilepsy events Media news

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.

Categories
epilepsy events Group News meetings news

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

Categories
Bristol epilepsy events news

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

Categories
news

#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/

 

 

Categories
Benefits epilepsy news

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.

Categories
epilepsy Media news

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!.

Categories
Bristol Education epilepsy events Health news

Bristol University Neuroscience Festival 2018

Bristol University Neuroscience Festival 2018

Friday 23rd March  – 4:00 pm to 6:00 pm  – Great Hall, Wills Building, Park St

Come and talk to scientists, investigate interactive exhibits and hands-on activities lead by scientists, explore the ‘Evolution of the brain’ and ‘Brain Art’ exhibitions and much more. Find out about current Neuroscience research through state of the art research posters.

Friday 23rd March  – 6:30 pm to 8:00 pm  – Victoria Rooms, Bristol University

Plenary lecture with Paul Howard-Jones: ‘The prehistory and future of the learning brain: How did we get this smart and what next?’

CLICK HERE TO BOOK YOUR FREE TICKETS

How does learning transform us biologically? What learning processes do we share with bacteria, jellyfish and monkeys? Is technology impacting on brain evolution?

These are just some of the questions explored on a fascinating journey through 3.5 billion years of brain prehistory.

Along the way, we discover:

  •  how the E. coli in our stomachs learn to find food
  •  why a little nap can help bees find their way home
  •  the many ways that action, emotion and social interaction have shaped our ability to learn and
  •  the central role of learning in our rise to top predator

Finally, this trek through time will lead us to ask: Faced with the unprecedented challenges of the 21st century, will evolution lead us to enhancement or extinction?

Saturday 24th March 2018 10am to 5pm , Great Hall, Wills Building, Park St

FREE Entry !

For all the public talks for which you need to book for, PLEASE CLICK HERE

For the event’s programme, PLEASE CLICK HERE to Download the PDF