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Covid19 Media webcast

Join the Epilepsy Foundation for an Evening with Epilepsy Advocate and Reality TV Star, Rick Harrison

Watch this fab live Webcast during Covid19 pandemic

WHAT

Reality TV Star, epilepsy advocate and person with epilepsy Rick Harrison is joining an Epilepsy Foundation Facebook Live. Rick will discuss his role as an Epilepsy Foundation board member, what it was like for him growing up with epilepsy, his life in his home state of Nevada during COVID-19, and fun stories from his famous shop and television show, “Pawn Stars.”

WHERE

Facebook – https://www.facebook.com/EpilepsyFoundationofAmerica/videos/593310541393628/

Just click the above link to watch the hour long entertaining webcast, from the Epilepsy Foundation of America ( http://www.epilepsy.com ) and Talk About It ( http://www.talkaboutit.org ).

WHY

Even in times like these, seizures don’t stop, and neither has the fight to END EPILEPSY®. Over a lifetime, 1 in 10 people will have a seizure, and 1 in 26 will be diagnosed with epilepsy.

Having lived with epilepsy throughout most of his childhood and teens, Rick became a national spokesperson for the Epilepsy Foundation in 2013 and since, has partnered with the Foundation to create awareness and help address the needs of the epilepsy community.

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®. The Foundation connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. 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. To learn more, visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook and Twitter.

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Covid19 epilepsy Epilepsy Awareness Day and Expo at Disneyland Media news Podcast webcast

Join Actor and Longtime Epilepsy Advocate, Greg Grunberg – Star Wars, A Star Is Born, Star Trek and more – for a Facebook Live with the Epilepsy Foundation

WHAT

Hear from Actor and friend of the Epilepsy Foundation and Bristol Epilepsy, Greg Grunberg (“Star Wars: The Rise of Skywalker,” “A Star is Born,” “Star Trek Beyond”), in this Facebook Live with the Epilepsy Foundation.

Greg discusses his work helping people talk about epilepsy and seizures, as well as his non-profit Talk About It that features lots of celebrities (TalkAboutIt.org), his acting career on Films & TV shows and his ongoing efforts to advocate and support everyone impacted by this Epilepsy.

ONLINE HERE

Facebook – https://www.facebook.com/54326959753/videos/927335664364328/

Watch this live entertaining 1 hour chat with Greg Grunberg here, via this link.

WHY

Even in times like these, seizures don’t stop, and neither has the fight to END EPILEPSY®. Over a lifetime, 1 in 10 people will have a seizure, and 1 in 26 will be diagnosed with epilepsy. Greg’s 23-year-old son Jake has had epilepsy for most of his life.

Greg is passionate about the cause and committed to creating awareness to help raise funds for research, services and education.

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®. The Foundation connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. 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. To learn more, visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook and Twitter.

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news

Coronavirus (COVID-19) and Epilepsy

Dr Simona Balestrini is the Muir Maxwell Research Fellow at the Epilepsy Society. Here, she has put together an FAQ factsheet for those with epilepsy about the coronavirus (COVID-19).

1. Do I have a higher risk to get the coronavirus if I suffer from epilepsy?

There is no evidence of increased risk of coronavirus infection in people with epilepsy compared to the general population. The risk is increased in people with weakened immune systems, older people, and those with long-term conditions like diabetes, cancer and chronic lung disease.

2. Do people with epilepsy have a weakened immune system?

There is no evidence that people with epilepsy have a weakened immune system, therefore they should not be considered ‘immunocompromised’ or to have an ‘immune deficiency’. Obviously, there are individual differences, e.g. some people with epilepsy might have a weakened immune system due to co-existing other health conditions and associated immunosuppressive treatment.

3. Does treatment with antiepileptic medications increased the risk of coronavirus infection?

There is no evidence of increased risk of coronavirus infection in people taking antiepileptic medications. Therefore, it is important to keep taking your epilepsy medicine as usual throughout any illness.

4. What should I do to avoid the infection?

There are a number of measures that might help in reducing the risk of infection. These include: avoid close contact with people who are unwell; hand hygiene (wash hands with soap and water, or use alcohol hand gel, often, especially after using public transport and at any time before eating); cover the mouth and nose when coughing or sneezing with a tissue or a sleeve; try to avoid touching your eyes, nose or mouth if your hands are unclean. Try to keep healthy by following a nutritious diet and taking gentle exercise. Keep your home well ventilated by keeping the window open.

5. What should I do if I have symptoms?

At present, it is recommended to stay at home for 7 days if you have either a high temperature, or a new persistent cough and you live alone. If you live with others and you, or one of them, have symptoms, then the whole household must stay at home and not leave the house for 14 days. This will help protect others in the community while people are infectious. Please follow the advice from Public Health England (PHE) which is updated daily: https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public. If you do become unwell and suspect you could have coronavirus, use the NHS 111 coronavirus service or ring 111 for advice.

Most cold medicines that you might consider for symptom relief (typically paracetamol to control fever or muscle aches) are fine.  But take advice before using products containing diphenhydramine (such as Benadryl). Just check the label before purchasing any products. If in doubt, check with the epilepsy team.

6. Will people with epilepsy be more severely affected by coronavirus?

For most people, coronavirus causes mild symptoms, and they recover quickly after a few days. Currently there is no information to say that people with epilepsy are more severely affected than people without health conditions.

7. If I catch coronavirus could it trigger a seizure?

There is no information about coronavirus triggering seizures in people with epilepsy. However, infections, fever (particularly in children), sleep deprivation and in general being unwell can trigger seizures in some people with epilepsy.

8. If I catch coronavirus, do I need any specific treatment?

As described above, many of your flu symptoms can be reduced with over the counter medications.  The doctors involved in treating you might recommend antivirals, antibiotics or other specific treatment.  Occasionally these may interact with your anti-epileptics, reducing their effectiveness or causing side effects.  Always let know doctors treating you that you are taking anti-epileptic medications and ensure you know the dose and type of tablets you use. 

9. Will the situation with coronavirus lead to shortages of my epilepsy medicine?

The Department of Health and Social Care is working with drug companies to minimise any impact of coronavirus on drug supplies. Drug companies have already built up stockpiles of medicines in preparation for Brexit and have now been asked to maintain this level of stockpiling. This should mean medicines will continue to be available, even if there are temporary disruptions to the supply chain. Do not try to stockpile your medication in case you have to self-isolate. This could cause shortages of medications and put others at risk of a seizure. It is best to carry on as normal.

10. If I have to self-isolate how will I get my medicines?

The NHS is currently advising people who may have been exposed to coronavirus to self-isolate. Just in case you need to do this, you may wish to think now about how you would get your medicines. This could be getting a friend or family member to collect your prescriptions for you. Or you could make arrangements for your pharmacy to deliver your medicines to your home. You may wish to check with them now if they offer this service, and how to sign up to it. Most prescriptions are now signed, sent and processed electronically.

Make sure you are registered for online services through your GP. This will enable you to book, check or cancel appointments online and order repeat prescriptions. Take your prescription to your pharmacy in plenty of time – up to seven days before you need your medication. This will allow your pharmacist to call other pharmacies or suppliers if there are any delays in getting your medication. Ordering your prescription in good time will also enable you to visit another pharmacy if your own pharmacy is temporarily closed due to the coronavirus.

Thanks to Epilepsy Society for these wonderful and helpful tips : https://www.epilepsysociety.org.uk/epilepsy-and-coronavirus-covid-19-faqs#.XnDuHZP7SL8

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news

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 Epilepsy Awareness Day and Expo at Disneyland Media Podcast

Talk About It Podcast : Episode 1

Link : https://www.stitcher.com/podcast/talk-about-it-4

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.

https://app.stitcher.com/splayer/f/348159/58200642

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.

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.

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epilepsy Health Media NHS Podcast

PODCAST: Episode 4 – EPILEPSY AND WOMEN

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

MORE INFORMATION ABOUT FEATURED SPEAKER:

NAME: Dr Howard Faulkner
Link: http://www.nbt.nhs.uk/our-services/a-z-consultants/dr-howard-faulkner

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

Follow Sam Downie on Twitter at: @samdownie / http://www.twitter.com/samdownie

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 ).

THANKS FOR LISTENING !

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
Education epilepsy events Health Research

Take Part In Epilepsy Research ! – at Exeter University

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:

Silvia Bortoli, my email is: s.Bortoli@exeter.ac.uk
Leandro Junges, my email is: l.l.l.junges@exeter.ac.uk

This work is generously supported by an EPSRC Institutional Sponsorship Grant for Predictive Modelling in Healthcare:  http://www.exeter.ac.uk/pmh/

Categories
Conference epilepsy events Media meetings

Epilepsy Foundation Pipeline Conference 2018

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

More information on the conference can be found at : https://www.epilepsy.com/node/2070606

Conference Agenda

Times are pacific standard time (PST).

Day 1 – Thursday, February 22, 2018

Welcome And Overview – 8:00-8:15 A.M.

  • Phil Gattone M.Ed, President and CEO, Epilepsy Foundation
  • Jacqueline French MD, Chief Scientific Officer, Epilepsy Foundation
  • Jody Iorns, Executive Director, Epilepsy Foundation Northern California

Session I: Technology In Epilepsy: Changing Trials And Therapeutics – 8:15-9:20 A.M.

Moderator: Daniel Friedman MD, Associate Professor, Department of Neurology, NYU Langone Medical Center

  • Seizure Diary – John Hixson MD, Associate Professor, University of California-San Diego
  • Seizure Prediction/Gauge – Gregory Worrell MD, PhD, Professor of Neurology, Mayo Clinic, Rochestor, Minnesota
  • Seizure Detection Device& – Robert Fisher MD, PhD, Maslah Saul Professor, Department of Neurology, Standford University Medical Center
  • Panel Discussion

Session II: Pre-Clinical Drugs – 9:20-10:40 A.M.

Moderator: Karen Wilcox PhD, Professor and Chair, University of Utah, College of Pharmacy

  • Propofol – Michael Rogawski MD, PhD, EpaleX
  • 2DG – Thomas Sutula MD, PhD, NeuroGenomeX, Inc.
  • TAK935/OV935 – Mahnaz Asgharnejad PharmD, Ovid/Takeda
  • 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

Networking Break: Poster Presentations – 10:40-11:00 A.M.

  • SUDEP Biomarker ChallengeEarly 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
  • Q & A

Networking Break: Poster Presentations – 2:35-3:00 P.M.

  • SUDEP Biomarker ChallengeCardio-Respiratory Biomarkers of SUDEP from an Unobtrusive Wearable Monitor – Kristen H. Gilchrist PhD, Meghan Hegarty-Craver PhD, William Gaillard MD

Update From 2017 Shark Tank Winners – 3:05-3:30 P.M.

  • 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.

Shark Tank Competition – 3:30-5:10 P.M.

Co-Moderators: Jacqueline French MD, Chief Scientific Officer, Epilepsy Foundation, and John O’Hurley, Actor, Philanthropist

  • Sharks:
    • Tony Coelho
    • Robert Fisher MD, PhD, Professor, Department of Neurology, Stanford University Medical Center
    • Daniel Friedman MD, Associate Professor, Department of Neurology, NYU Langone Medical Center
    • Elizabeth Garofalo MD, Principal, EAG Pharma Consulting
    • Shivkumar Sabesan PhD, Staff Hardware Engineer, Verily Life Sciences LLC
  • Finalists:
    • Automated detection of epileptic lesions from MRI
    • Machine vision based solution for noninvasive seizure quantification and alarm
    • Repositioning compounds for use in refractory epilepsy
    • Improved surgical outcomes with 3D scanning
    • Korwave
    • Virtual reality simulations for the management of status epilepticus

Accelerator Award Reception & Award Presentation – 6:00-8:00 P.M.

Day 2 – Friday, February 23, 2018

Session VI: Social Innovation And Power Of Partnerships – 8:05-8:55 A.M.

Moderator: Brandy Fureman PhD, Vice President of Research and New Therapies, Epilepsy Foundation

  • The Epilepsy Foundation – Brandy Fureman PhD, Vice President of Research and New Therapies, Epilepsy Foundation
  • The Epilepsy Study Consortium – Jacqueline French MD
  • Citizens United for Research in Epilepsy (CURE): Infantile Spasms Initiative – Laura Lubbers PhD, Chief Scientific Officer, CURE
  • Tuberous Sclerosis Alliance: Preclinical Trial Consortium – Steve Roberds PhD, Chief Scientific Officer, Tuberous Sclerosis Alliance
  • Pediatric Epilepsy Research Foundation & Pediatric Epilepsy Research Consortium (PERC) – Kelly Knupp MD, Children’s Hospital Colorado
  • Panel Discussion

Session VII: The Value Of Registries – 8:55-9:45 A.M.

Moderator: Deborah Hirtz MD, Professor, Neurological Sciences and Pediatrics, University of Vermont School of Medicine

  • Human Epilepsy Project (HEP & HEP 2) – Daniel Lowenstein MD, Executive Vice Chancellor and Provost, University of California-San Diego
  • Rare Epilepsy Network (REN) – Dale Hesdorffer PhD, Professor of Epidemilogy at the Columbia University Medical Center
  • Registry Participant Perspective – Ms. Monica Weldon, President and CEO, Bridge the Gap SYNGAP, and mother of a child with a rare epilepsy
  • Panel Discussion / Q & A

Networking Break: Poster Presentations – 9:45-10:10 A.M.

  • SUDEP Biomarker ChallengeMultivariate computer based classification of biomarkers for SUDEP – Peter Carlen MD, Berj Bardakjian PhD, Stiliyan Kalitzin PhD, and Martin del Campo MD.

Session VIII: Clinical Devices – 10:20-11:40 A.M.

Moderator:& Josef Parvizi MD, PhD, Professor, Department of Neurology, Standford University Medical Center

  • StarStim – Ana Maiques, CEO, Neuroelectrics
  • Embrace Seizure Detection Watch – Matteo Lai, Co-Founder and CEO, Empatica
  • Epilog, Wearable Seizure Diary – Mitchell Frankel PhD, Signal Processing Engineer, Epitel
  • SPEAC System – Luke Whitmire PhD, Chief Science Officer, Brain Sentinel, Inc.
  • Intraventricular valproate – Daniel Abrams MD, Cerebral Therapeutics
  • Cardioprotective Effects of Vagus Nerve Stimulation (VNS Therapy®) in Epilepsy – Richard Verrier PhD, LivaNova
  • Neuronaute – Dr. Samir Medjebar, Business Development Director, Bioserenity
  • Wireless, dry electrode, medical grade EEG headset – Aswin Gunasekar MS, MBA, Founder, Zeto Inc.

Session IX: The Research Roundtable For Epilepsy – 11:40 A.M.-12:15 P.M.

  • Introduction to the Research Roundtable for Epilepsy Initiative – Brandy Fureman PhD, Vice President, Research and New Therapies, Epilepsy Foundation
  • 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
  • ZYN002, CBD Gel – Donna Gutterman PharmD, Zynerba
  • ZX008, Low-Dose Fenfluramine – Glen Morrison PhD, Zogenix
  • Staccato Alprazolam – Jouko Isojarvi MD, PhD, Engage Therapeutics Inc.
  • XEN1101 – Y. Paul Goldberg MBChB, PhD, FRCPC, Xenon
  • Ganaxolone – Julia Tsai PhD, Executive Director, Clinical Development, Marinus
  • NRL-1, Intranasal Diazepam – Craig Chambliss, President & CEO, Neurelis

Networking Break: Poster Presentations – 2:30-2:50 P.M.

  • SUDEP Biomarker ChallengePRESUDE – 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

Reception – 4:15-5:15  P.M.