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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
epilepsy meetings

July Meeting: What Took Place

WHAT TOOK PLACE AT OUR MEETING: JULY 4th, 2017

A. MEDICINES UPDATE :

Our Nurse Helen talked about Medications that are not available any longer ( a list of what was mentioned will be available here soon ) .

We also talked about how AEDs work. There’s a really good film to watch by Epilepsy Research UK, presented by Chair of Trustees, Dr Graeme Sills, who gives you a clear picture of the type of drugs that are used in epilepsy and how they work.

B. NEW 7T MRI SCANNER IN CARDIFF

We talked about a new 7T MRI at Cardiff University, that is now being used for Epilepsy and other conditions. The BBC made a film about this and we showed it in the group, you can watch it via this link:

http://www.bbc.co.uk/news/health-40488545

The world’s most detailed scan of the brain’s internal wiring has been produced by scientists at Cardiff University.

The MRI machine reveals the fibres which carry all the brain’s thought processes.

It’s been done in Cardiff, Nottingham, Cambridge and Stockport, as well as London England and London Ontario.

Doctors hope it will help increase understanding of a range of neurological disorders and could be used instead of invasive biopsies.

Fergus Walsh (BBC Journalist) volunteered for the project – not the first time his brain has been scanned, he says.

Computer games

In 2006, it was a particular honour to be scanned by the late Sir Peter Mansfield, who shared a Nobel prize for his work on developing Magnetic Resonance Imaging, one of the most important breakthroughs in medicine.

He scanned me using Nottingham University’s powerful new 7 Tesla scanner. When we looked at the crisp, high resolution images, he told me: “I’m a physicist, so don’t ask me to tell you to whether there’s anything amiss with your brain – you’d need a neurologist for that.”

I was the first UK Biobank volunteer to have their brain and other organs imaged as part of the world’s biggest scanning project.

More recently, I had my brain scanned while playing computer games, as part of research into the effects of sleep deprivation on cognition.

So my visit to the Cardiff University’s Brain Research Imaging Centre (CUBRIC) held no particular concerns.

Brain scan
Image captionDoctors hope the scans will increase understanding of neurological disorders

The scan took around 45 minutes and seemed unremarkable.

A neurologist was on hand to reassure me my brain looked normal.

My family quipped that they were happy that a brain had been found inside my thick skull.

But nothing could have prepared me for the spectacular images produced by the team at Cardiff, along with engineers from Siemens in Germany and the United States.

The scan shows fibres in my white matter called axons. These are the brain’s wiring, which carry billions of electrical signals.

Axonal density

Not only does the scan show the direction of the messaging, but also the density of the brain’s wiring.

Another volunteer to be scanned was Sian Rowlands who has multiple sclerosis.

Like me, she is used to seeing images of her brain, but found the new scan “amazing”.

Conventional scans clearly show lesions – areas of damage – in the brain of MS patients.

But this advanced scan, showing axonal density, can help explain how the lesions affect motor and cognitive pathways – which can trigger Sian’s movement problems and extreme fatigue.

Brain scan
Image captionThe scanner is one of only three in the world
Brain scan
Image captionThe scan shows fibres in the brain’s white matter, called axons

Prof Derek Jones, CUBRIC’s director, said it was like getting hold of the Hubble telescope when you’ve been using binoculars.

“The promise for researchers is that we can start to look at structure and function together for the first time,” he said.

The extraordinary images produced in Cardiff are the result of a special MRI scanner – one of only three in the world.

The scanner itself is not especially powerful, but its ability to vary its magnetic field rapidly with position means the scientists can map the wires – the axons – so thinly it would take 50 of them to match the thickness of a human hair.

The scanner is being used for research into many neurological conditions including MS, schizophrenia, dementia and epilepsy.

My thanks to Sian, Derek and all the team at CUBRIC.

Follow Fergus on Twitter.

C. BBC RADIO 5 LIVE EPILEPSY FILM

BBC Radio 5 Live have released a video – 5 things to know if you love someone with epilepsy. It is a moving story about a mum of three Rachael. All three of Rachael’s children have epilepsy and they can sometimes have up to ten seizures a day. “You never know when your child might start having seizures,” said Rachael. “If you’re able to know what a seizure looks like, it might just take that fear away from you slightly.”

Watch the film here : http://www.bbc.co.uk/programmes/p057d2r3

D. WHAT IS THE VNS ?

We talked about the benefits of the VNS ( Vagal Nerve Stimulator ) in Epilepsy. A few of the members of the group have it implanted. They talked about their own experience of it, whilst other asked questions. Our Nurse Helen explained what it did.

E. OUR NEXT MEETING

Our Next meeting takes place in September, the 1st Tuesday of the month, from 7PM. We shall have a speaker from the hospital. More details will be added here soon.