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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 Benefits Campaigns Department For Work And Pensions events Health news

Report – Disability campaigner spits at #bristolmayor #LibDem candidate John Rogers, at a #HardestHit peaceful protest in Bristol

On Thursday 25th October, a peaceful #HardestHit protest took place during lunchtime, organised by the Bristol Disability Equality Forum , held outside the Council House in Bristol, UK – yesterday (Thursday 25th Oct 2012).But – a few disruptive things took place, and one of these was picked up by the local press (The Post) who posted this story today “A Disability campaigner spat at #bristolmayor #LibDem candidate Jon Rogers”. And of course, a row broke out between Jon and other people with Disability’s, during this peaceful protest held in Bristol, campaigning against the cuts to Welfare, and employment.

As usual, the token ‘anarchist’, who has their own agenda, gets all the publicity from the media, as well as giving free publicity to two of the mayoral candidates, while the actual reason for the demonstration (i.e. disabled people’s fears of the cuts hitting them) gets a little bit at the end of the report. 

Mark Williams – co-Chair Bristol Disability Equality Forum

Background about the cuts to Welfare in the UK:

A report by the Children’s Society and Disability Rights UK claims 230,000 severely disabled people are set to get between £28 and £58 less in benefits every week, while 100,000 children stand to lose up to £28 a week.

Also – up to 116,000 disabled people whoWORK , will be at risk of losing £40 a week (which helps with costs such as Travel and Work Place adaptions, that employers do not provide!

Ms Kaye Long said: “On a day-to-day basis the cuts will have a huge effect on people’s basic human rights and living conditions. At least half a million disabled people will feel the negative effects.”

What the local Press had to say: (link to this news story)

http://www.thisisbristol.co.uk/Campaigner-spits-mayor-candidate-Jon-Rogers/story-17186260-detail/story.html

Here’s a few quotes, take from The Post (Bristol) (www.thisisbristol.co.uk) who reported on this protest, that I attended:

Quote: 
MAYORAL candidate Jon Rogers was spat at by a demonstrator when he attended a protest over cuts to benefits for disabled people. A man campaigning on behalf of a rival candidate also threw his cigarette at the Liberal Democrat hopeful, who is the city council deputy leader.

Jon Rogers said “he was appalled at what happened and said he believed the actions constituted “assault”.” The campaigner who spat at Jon Rogers, ‘Michael Wright’, attempted to justify his actions by claiming Jon Rogers had “no place” at the march because of Bristol City’s Council’s planned closures of care homes for Disabled and the Elderly.

The activist, who is campaigning for Trade Union and Socialist Coalition mayoral candidate Tom Baldwin, told The Post: “I don’t think he has much of a place at a demonstration like this. He has closed operations for eight care homes in Bristol.”.

After Jon Rogers walked away from the fracas he said: “I have come down here to offer myself up to talk about disability issues, not to be abused in an appalling way. It’s assault.” But Jon Rogers said he did not intend to take the matter further.

Read More:

Read the full article from ‘The Post’ (This Is Bristol), here: http://www.thisisbristol.co.uk/Campaigner-spits-mayor-candidate-Jon-Rogers/story-17186260-detail/story.html

SAM DOWNIE’S COMMENTS ABOUT WHAT TOOK PLACE:

As I was attending this peaceful ‘Hardest Hit’ protest, I’d thought I would share with you. Read to see what really went on and what I observed over the space of Lunchtime.

1. Jon Rogers

Around 20 minutes into this peaceful protest, Jon Rogers came by on his bike, wanting to know what was taking place. He did start to talk to various people, including me and yes he did listen to concerns.

Whilst I was talking to other people, I heard a argument row taking place, between Jon and someone who I didn’t know, someone who I’d thought had just ‘shown up’.  So I walked over to where the row was taking place, and listened for a short while.

No I didn’t see Jon being spat at. No I didn’t see a cigarette flung at him.

But – I did hear Jon say (during the argument taking place) “I don’t support people like you, and I don’t think you all need to be here”. Was this a dig at the person who spat at Jon, or was this a general thought/saying of his to everyone who was there (me included) ? (if that’s the case then that could be called ‘indirect disability discrimination’).


Other people I saw there and talked to were:

– Marvin Rees ( Bristol Mayor, candidate for Labour party) *in this photo

– Tom Baldwin ( Bristol Mayor, candidate – Trade Unionist and Socialist Coalition)

thanks both for speaking to me and coming to see what was going on and learning more about the Hardest Hit welfare cuts.

2. Why Was I There ?

Simple. I work. I have a Disability, and I claim Benefits (DLA and Working Tax Credits) which help me to stay in WORK.  I’m a self-employed Journalist (freelance for BBC News, freelance for The Guardian, freelance for Channel 4 + other technology magazines and websites). I’m also a Presenter / broadcaster. More information about me at my website :http://www.dsoundz.co.ukAnd as a Broadcaster/Journalist, these Welfare cuts will effect me, and my work.

Why? well perhaps I can answer it like this: Why do I need to claim Benefits?

3. What’s my Disability ?

It’s simple again. I have 3 forms of Epilepsy. (read more about me and Epilepsy here : http://www.dsoundz.co.uk/sam-and-epilepsy ). Epilepsy effects over half a million people in the UK, and over 50 million people worldwide.

I am banned from Driving (it’s against the law to drive with Epilepsy, where ever you are in the world), so need help with costs for getting to / and back from work.  My seizures effect the way I work too, as Epilepsy effects Memory and body control.

The AED’s (anti-epilepsy drugs) I take, don’t cure Epilepsy… as, there is no cure for Epilepsy… fact!All AEDs help by dampening the effects of seizures. And I take quite a bit of drugs per day to help combat seizures, but like all drugs, there are side-effects.

When you look at me. Ask yourself this: Can you see me having a seizure? (I have over 10 of these a day!). Epilepsy is a ‘hidden disability’, as it’s within the brain. So the next time you see me, do ask me How am I, and ask about what Epilepsy is and how it effects me and my work.

There’s more information about Epilepsy here : http://bristolepilepsy.org.uk/resources/epilepsy-facts/

4. What to do next ? 

Carry on protesting.
Carry on sending out the message that Welfare cuts, will hit everyone – in employment (or not).

What I am doing right now is…  talking to MP’s and various Lords in the HoC, by helping them with research.

I’m also doing some research for the ‘POST’ office (that is the Parliamentary Office for Science and Technology) a government body who discuss research and analysis in all kinds of things, but more recently they have held discussions and posted documents about Welfare benefits looking at things such as IT (technology) and how people with various impairments might not be able to use these new services being introduced by the DWP (department for work and pensions).

I’m also looking into the Data Protection Act and how Fraud is rife within the DWP and it’s Work Programme (but I’ll blog about this at another time).

5. To Sum Up

So before you come to the conclusion that people with Disability’s, do not work / or are benefit scroungers. Do think again ! and make sure you know yourself what the right thing to say is.

Working people like me, ARE tax payers. We pay rent too.  This is why I protest against the Welfare cuts, as it effects employment and a chance in a working life.

A Disability is for life…. fact !

Disability, effects everything around you, and sometimes there’s a small chance of a cure. There isn’t one right now for the over 50 million people worldwide who suffer daily with Seizures and Epilepsy.

So now you can see why I was there at the Hardest Hit protest in Bristol, on Thursday 25th October 2012.

Credits:

photo’s by Sam Downie (c)