Category Archives: meetings

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

 

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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

epilepsy pipeline conference 2018 san francisco

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.

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.