Support in Bristol - for people affected by Epilepsy and Seizures
Author:Sam Downie
I'm a Presenter/Speaker/Voice-over based in Bristol, UK. I've been on Radio, Television and on online webcasts broadcast all over the world. I have worked with major clients such as BBC, ITV, Channel4, FIVE, CBS, NBC, IDG Expo, Sound On Sound Magazine and many more! Visit the website at: www.dsoundz.co.uk
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.
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
Special announcement from @GregGrunberg! Join us on November 9, 2019, for a very special event called #EndEpilepsyLIVE. Stay tuned for details about where you can watch and who will be attending. pic.twitter.com/OtJtuolBo9
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 YOU – Are you #TeamTrek or #TeamWars? Here’s what to do, and how you can take part:
Take a photo or do a short video clip of yourself
Post photo or video of you, on Twitter or Instagram and use the hashtags #TeamTrek or #TeamWars.
In your video or photo, say why you picked your team hashtag.
Also add the hashtag #EndEpilepsyLIVE to your Twitter or Instagram post.
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.
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
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.
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.
Episode Info
Actor Greg Grunberg (A Star Is Born, Star Wars, Star Trek, Heroes, Alias) takes the Talk About It organization to the next level with this brand new podcast!
In this episode, he sits down with filmmakers such as director JJ Abrams (Star Wars, Star Trek) and celebrities that use their platforms to help remove the stigma of Epilepsy and promote the spreading of knowledge about the condition.
About This Show
Talk About It! – The Podcast, hosted by Greg Grunberg and produced by the Epilepsy Foundation, is a new and exciting way to help raise epilepsy education and awareness. Each episode will include interviews and profiles of people living with epilepsy, facts and stats about epilepsy and seizures, tips on healthy living, and special guests from all over the entertainment world.
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.
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.
Dr/Consultant Howard Faulkner, is a Epilepsy Neuro-Consultant in Bristol. In this podcast recording, Dr Faulkner talks about WOMEN AND EPILEPSY, providing a great insight and information in how Epilepsy and Seizures effect the female body, at all ages.
Podcast Duration: 1 Hour Podcast Recorded: November 2012 Podcast Recorded at: Bristol Epilepsy Support Group Monthly Meeting
Year of first qualification: 2002, Imperial College, London Specialty: Neurology Clinical interest: Epilepsy, Epilepsy Surgery
Dr Howard Faulkner completed his BSc, PhD and MBBS at Imperial College, London before moving to Bristol for his Medical and General Neurology training. He then completed an Epilepsy and EEG Fellowship in Sydney, Australia, and was appointed as a consultant in 2011.
Dr Faulkner provides a full range of epilepsy services from first seizure clinics to epilepsy surgery workup.
PODCAST PRODUCTION NOTES:
This podcast was recorded and produced by SAM DOWNIE from Dsoundz Media.
Visit the website, at: http://www.dsoundz.co.uk
This is Episode 4 from the UK Epilepsy Podcast, and it comes from the Bristol Epilepsy support group, in Bristol, SW England. Follow the hashtag on Twitter: #ukepilepsypodcast for updates and more. And follow @BristolEpilepsy on Twitter ( http://www.twitter.com/BristolEpilepsy ).
Do you have lived experience of #Epilepsy, or care for somebody that does? Come to the workshop on Wed 21st March, held at #Exeter University – to help us develop a new approach to #Epilepsy Surgery using mathematical modelling to understand where #Seizures start and how they spread throughout the #Brain . Here’s the info :
Improving surgical treatment for epilepsy workshop
A third of people diagnosed with epilepsy do not respond to drug treatments and surgery is the only treatment option
Surgery is often not completely successful as it is difficult to identify exactly which areas of the brain are causing the epilepsy
Researchers in Exeter are developing a new approach to epilepsy surgery using mathematical modelling to understand where seizures start and how they spread throughout the brain.
How can you get involved?
We are keen to invite people who have, or care for someone with epilepsy to a workshop to discuss this research. If you have had surgery or have been offered or are considering surgery we would be particularly interested in hearing from you.
Join us at our workshop:
WHEN:Wednesday 21 March 2018 TIME: afternoon (exact time TBC) WHERE: Living Systems Building, University of Exeter, Stocker Road, EX4 4QD
Notes:
Refreshments will be provided
We will pay a small “thank you” payment of £25 and also reimburse your travel expenses (such as Train and Taxi). If you would like to join us, or for more information, please contact:
Every two years, the Epilepsy Foundation of America, holds its Pipeline Conference to bring together decision-makers with a stake in the field of epilepsy treatment, therapeutic innovation, and product development. This exciting meeting provides a forum for surveying new therapies in development, exploring future advancements, and encouraging collaborations and partnerships.
The Pipeline Conference take’s place February 22-23, 2018, at the Westin St. Francis hotel in San Francisco, California. This conference will also feature a Community Day on Saturday, February 24th, where people living with epilepsy and their family, friends, and advocates gather for a day of learning, support, and networking.
The Conference Agenda can be found below the video(s).
Here’s the coverage from the 2018 #Epilepsy Foundation Pipeline Conference 2018. Below are the video feeds of the conference, please do skip through the video for topics you might like to hear about.
LIVE VIDEO : Epilepsy Foundation Pipeline Conference 2018
Adenosine-Augmentation Therapies – Deltev Boison PhD, R.S. Dow Neurobiological Laboratoires and Legacy Research Institute
Pre-clinical Padsevonil – Rafal Kaminski MD, PhD, Senior Director and Head of Epilepsy, UCB Pharma
Injectable Diazepam: XeriJect™ – Steven Prestrelski PhD, Xeris
Novel mTOR Inhibitors – Wolfgang Löscher PhD, Professor and Head of the Department of Pharmacology, University of Veterinary Medicine Hannover, and Head of the Center for Systems Neuroscience, Hannover, Germany
SAGE-324 – Rebecca Hammond PhD, Director, In Vivo Pharmacology, Sage Therapeutics
SUDEP Biomarker Challenge: Early Detection of Myacardial Injury as a Biomarker for SUDEP in Living Epilepsy Patients – Barbara L. Kroner PhD, John M. Schreiber MD, Lowell H. Frank MD
Session III: Epilepsy Development – Regulatory And Financing Considerations: How To Get Your Investment And How To Get Your Investment To Pay Off – 11:10 A.M.-12:25 P.M.
Moderator: Karen Bergman, Vice President, Investor Relations and Corporate Communications, FibroGen, Inc.
Talk 1: Will epilepsy drugs be able to be reimbursed without comparative data showing superiority, and if you need comparative data, how do you get it?
How to make a difference: The role of comparative data in AED development: Konrad Werhahn MD, Senior Medical Director, Global Clinical Development, UCB Pharma
Payer Perspective
If comparative superiority data is needed, how is it acquired?: Daniel Friedman MD, Associate Professor, Department of Neurology, NYU
Preclinical Differentation Efforts in the NINDS Epilepsy Therapy Screening Program: John Kehne PhD, Program Director, ETSP/NINDS
Panel Discussion
Talk 2: Orphan versus broad market development
Dr. Jeremy Levin BChir, MB, DPhil, Chairman of the Board of Directors and CEO, Ovid Therapeutics
Liza Squires MD, Chief Medical Officer, Zynerba Pharmaceuticals
Panel Discussion
Networking Lunch – 12:25-1:30 P.M.
Session IV: Early Stage Devices – 1:35 P.M.-1:55 P.M.
Moderator: Kimford Meador MD, Professor, Department of Neurology and Neurological Sciences, Stanford University School of Medicine
Epilog PreOp Ictal – Gregor Strobbe, CEO, Epilog
IMI CNS RADAR – Mark Richardson PhD, Innovative Medicines Initiative, Professor, King’s College London
Session V: Regulatory Requirements For Seizures/Epilepsy Devices (E.G., What Would Be The Regulatory Requirements For An Implanted Device?) – 1:55-2:35 P.M.
Speaker: William Heetderks MD, PhD, Clinical Deputy, Division of Neurological and Physical Medicine Devices, Office of Device Evaluation, Food and Drug Administration
SUDEP Biomarker Challenge: Cardio-Respiratory Biomarkers of SUDEP from an Unobtrusive Wearable Monitor – Kristen H. Gilchrist PhD, Meghan Hegarty-Craver PhD, William Gaillard MD
Introduction by Jacqueline French MD, Chief Scientific Officer, Epilepsy Foundation
Jonas Duun-Henriksen PhD, Senior Scientific Researcher at UNEEG medical A/S: 24/7 EEG SubQ in the wild won $75,000 in the audience vote for the People’s Choice Award.
Paula Gomez PhD, CEO of Epistemic, and Hilda A. Cerdeira PhD, Fellow of the America Physical Society: “Epistemic: Device for epileptic seizure prediction” won $50,000 awarded by the judges.
SUDEP Biomarker Challenge: Multivariate computer based classification of biomarkers for SUDEP – Peter Carlen MD, Berj Bardakjian PhD, Stiliyan Kalitzin PhD, and Martin del Campo MD.
2016 Meeting Goals and Deliverables – Jacqueline French MD, Chief Scientific Officer, Epilepsy Foundation
2017 Meeting Goals and Deliverables – Kelly Knupp MD, Associate Professor of Pediatrics and Neurology, Department of Neurology and Neurodiagnostics, Children’s Hospital Colorado
2018 Meeting Goals and Deliverables – Brandy Fureman PhD, Vice President, Research and New Therapies, Epilepsy Foundation
Panel Discussion
Networking Lunch – 12:25-1:25 P.M.
Session X: Clinical Drugs 1 – 1:30-2:30 P.M.
Moderator: Pavel Klein MD, Director, Mid-Atlantic Epilepsy and Sleep Center
BIS-001 ER – Stephen D. Collins MD, PhD, Biscayne/Insero
SUDEP Biomarker Challenge: PRESUDE – Brainstem MRI biomarker to Predict the risk of Sudden Unexpected Death in Epilepsy – Carolina Ciumas PhD, Philippe Ryvlin MD, PhD, Samden Lhatoo MD
Session X: Clinical Drugs 2 – 2:50-4:00 P.M.
Moderator: Pavel Klein MD, Director, Mid-Atlantic Epilepsy and Sleep Center
Clinical Padsevonil – Pierandrea Muglia MD, Vice President & Head Neuroscience Discovery Medicine, UCB Pharma
PF-06372865 – Rachel Gurrell, Clinical Lead, Early Clinical Development, Pfizer
TIL-TC150 – Dr. Bláthnaid McCoy MB BCh, BAO, MRCPI, CSCSN (EEG), MSc, Program Director, Neurology Residency & Epilepsy Fellowship Programs; Assistant Professor of Pediatrics, University of Toronto; Pediatric Neurologist, Hospital for Sick Children Toronto, Tillray
CX-8998 and CX-5395 – Spyros Papapetropoulos MD, PhD, Head of Research and Development and Chief Medical Officer at Cavion, Inc.
Epidiolex (cannabidiol, CBD) in rare epilepsy syndromes and the GW/Greenwich Biosciences pipeline – Volker Knappertz MD, GW/Greenwich Biosciences
Clobazam Oral Soluble Film and Diazepam Buccal Soluble Film – Michael Rogawski MD, PhD, Medical Advisor, MonoSol Rx, Professor of Neurology and Pharmacology, University of California Davis
Closing Remarks – 4:00-4:05 P.M.
Final Networking Reception – 4:05-5:05 P.M.
Epilepsy Foundation Pipeline Community Day (Sat 24 Feb, 2018)
Information: Learn about new therapies and wellness approaches and share challenges of living with epilepsy and associated problems.
Empowerment: Take control and become an active member of your care team to work toward no seizures!
Hope: Understand the importance of research and how you can help.
Community: Join friends, families, and advocates for a day of learning, support, and networking.
Agenda: February 24, 2018
Times are pacific standard time (PST).
Welcome And Introduction – 8:30-8:40 A.M.
The Epilepsy Experience – 8:40-9:00 A.M.
Share, listen, and learn through people’s lived exeperience with epilepsy.
Kerry Youker, patient advocate, Epilepsy Foundation Northern California
Steve Kahanic, advocate
The Top 10 Things You Need To Know About Epilepsy – 9:00-9:25 A.M.
Key concepts and new ideas about epilepsy
Christianne N. Heck MD, Keck Medical Center
Progress On New Therapies – 9:25-9:45 A.M.
What’s new and what’s coming in the epilepsy pipeline
Jacqueline French MD, New York University; Chief Scientific Officer of the Epilepsy Foundation
Morning Breakout Classes – 10:00 A.M.-12:00 P.M.
Breakout Class 1: Talk All About It!: Journeys in Epilepsy
Hear about and discuss approaches and updates for treating the first seizures, selecting seizure medicines, and what to do when medicines don’t work. Session will be repeated in the afternoon, but with different speakers.
Moderator: Robert Fisher MD, PhD, Stanford Neuroscience Health Center
Panelists:
Robert Knowlton MD, University of California-San Francisco (UCSF) Medical Center
Maritza Lopez RN, BSN, UCSF Medical Center
John Hixson MD, UCSF Medical Center
Steven Kahanic, advocate
Beth Ruggles, parent advocate, Epilepsy Foundation Northern California
Breakout Class 2: Challenges and Opportunities: When It’s More than Just Seizures
Epilepsy affects people in many ways. This session will explore challenges and strategies to enhance management of seizures and emotional health.
Moderator: Kathleen Farrell MD, Epilepsy Foundation
Panelists:
John Barry MD, Stanford University Medical Center
Karen Parko MD, UCSF Medical Center
Jenny LaBaw, Crossfit Trainer; Program Manager for the Epilepsy Foundation Wellness Institute
Mike Levin, advocate, cinematographer
Lunch/Exhibits – 12:00-1:15 P.M.
Afternoon Breakout Classes – 1:15-3:15 P.M.
Breakout Class 3: Seizures and Your Life: Emergencies, Alerts, Tools, & Family
What’s New in Seizure Emergencies and Clusters: Barry E. Gidal PharmD, RPh, University of Wisconsin
E-tools and Devices for Recording and Alerting of Seizures: Patricia O. Shafer RN, MN, Epilepsy Foundation
Gender and Epilepsy: The Importance of Family Planning: Jeffrey D. Kennedy MD, Juliana R. Melo MD, MSCS, University of California Davis Health
Ask the Experts
Breakout Class 4: Talk all About It!: Journeys in Epilepsy – 2:45-3:15 P.M.
This is a repeat of morning Breakout Class 1. Topics will be similar, but will include some different speakers.
Moderator: Nancy Santilli RN, MSN
Panelists:
Joseph I. Sirven MD, Mayo Clinic Arizona; epilepsy.com
Maritza Lopez RN, BSN, UCSF Medical Center
Kimford J. Meador MD, Stanford Neuroscience Health Center
Kerry Youker, parent advocate, Epilepsy Foundation Northern California
Making A Difference: How Can We All Get Involved? – 3:30-4:15 P.M.
Moderator: Jody E. Iorns, Epilepsy Foundation Northern California
Panelists:
Jon Scheinman, Community Development, Epilepsy Foundation
Kathleen Farrell MB BCh, Clinical Research, Epilepsy Foundation
Sonya Dumanis PhD, Research Innovation, Epilepsy Foundation
Join AFO Audio and friends, for an exciting fundraising gig for Epilepsy Society to be held in Bristol on FRIDAY 10TH AUGUST, 2018.
