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.

Advertisements

#EpilepsyDay 2018

Today it’s International #EpilepsyDay ( 12 February 2018).

ibe-small-logo

International Epilepsy Day, a joint initiative created by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), is a global event celebrated annually on the 2nd Monday of February, to promote awareness on epilepsy right around the world. With IBE and ILAE representation in more than 120 countries, this is a powerful opportunity to highlight the problems faced by people with epilepsy, their families and carers, in every region of the world.

This is a day for everyone and every organisation:-

  • no matter where you are
  • no matter how small your group or how wide your geographical spread
  • no matter whether your focus is on the medical or on the social aspects of the disease

While International Epilepsy Day celebrations vary from region to region, with cultural, geographical and climatic circumstances all impacting on activities, the common thread is the desire to highlight epilepsy and to bring attention to the need for better awareness and understanding, appropriate legislation, improved diagnosis and treatment services, and increased research in order to better the lives of all those affected by epilepsy.

This is your day, to celebrate how you will. Any activity, no matter how small, when combined with the efforts of individuals, groups and associations around the world, will collectively impact on how epilepsy is viewed. What you do to mark the day, in your own way, with the resources available to you, will make a difference to the 65 million people in the world who are living with epilepsy.

VISIT : https://epilepsy.org/

 

 

Blue Badge Gov Consultation 2018

People with hidden disabilities could enjoy new freedom with blue badge changes. Consultation expanding the Blue Badge criteria released.

People with hidden disabilities could soon have greater access to blue badges under new plans from Transport Minister Jesse Norman today (21 January 2018).

The proposals, which would herald the most significant changes since the blue badge was introduced in 1970, would help remove barriers to travel for people with conditions such as dementia and autism, allowing them better access to work, shops and amenities. This is part of the drive for greater parity between the treatment of physical and mental health conditions.

Currently, about 2.4 million disabled people in England have a blue badge, allowing them to park on roads without charge and normally without time limit. Around 75% of blue badge holders say they would go out less often if they didn’t have one.

Transport Minister Jesse Norman said:

Blue badges give people with disabilities the freedom to get jobs, see friends or go to the shops with as much ease as possible.

We want to try to extend this to people with invisible disabilities, so they can enjoy the freedom to get out and about, where and when they want.

The changes could also see a variety of healthcare professionals, who are better placed to identify if mental health causes mobility issues, carry out assessments to determine if a blue badge should be given.

Sarah Lambert, Head of Policy at the National Autistic Society, said:

The National Autistic Society welcomes this government proposal. It could mean that many more autistic people will qualify for a Blue Badge, which can be a lifeline.

There are an estimated 700,000 autistic people in the UK and whilst every person on the autism spectrum is different, for some, not being able to park in a predictable place close to a destination can cause a great deal of anxiety and put their safety at risk. Some autistic people can experience too much information from the environment around them on public transport, while other autistic people might not be aware of dangers on the road.

However, current Blue Badge rules mean that all-too-often autistic people don’t qualify. The National Autistic Society has raised this issue with government over recent years and we are pleased to see they have listened to the concerns of autistic people and their families. We hope the government will make this important change and we look forward to working with them to make sure that autistic people and their families benefit.

Sarah’s Epilepsy Fundraising Story

Sarah Reid – is an inspiration and a member of the Bristol Epilepsy Support Group, in Bristol, England.

In spite of undergoing surgery for left temporal lobe epilepsy this year at Southmead Hospital, Bristol, Sarah has still managed to fundraise relentlessly for the five charities closest to her heart: Epilepsy Society, Young Epilepsy, Epilepsy Action, Young Carers and Mothers for Mothers.

‘Fundraising is a way of giving back,’ said Sarah. ‘Epilepsy Society and the other four charities have always been there for me when I have needed them. They have supported me in the lead up to my surgery, they have been there for me when I have been having a down day or when I have been struggling with my seizures or with employment issues.

Sarah fund raises for the #epilepsy group in Bristol, she says that…

It was rewarding giving a cheque last night  (February 6th, 2018) for over £40 to Bristol Epilepsy Support Group!

It was lovely giving 107 epilepsy information packs with laylas book epilepsy book for kid’s inside with 1st aid leaflets young epilepsy sent and young carers leaflets too. With information as well as stickers and balloons to put inside to help making the information packs exciting and educational , raising epilepsy awareness and money for epilepsy charities.

When I was at school teachers told me off for daydreaming when really I was having a seizure. I hope that raising epilepsy awareness in schools will stop what happened to me happening to anyone else.

Sarah also says..

A big thank you to staff and customers at downend co op for helping me to raise the money and to young epilepsy and young carers who kindly donated information leaflets and stickers and balloons. 

Now my next goal is to raise another £700 to send enough information packs for schools in Bristol.   Then my daughters Layla’s book and information packs will be in all South Gloucestershire schools and Bristol schools raising epilepsy awareness.  The cheque from the profit from her book will be sent to the Epilepsy Society in the next few months.

I am at Downend Co-op in Bristol, every week raising money for 7 charities close to my heart and donating Layla’s book EPILEPSY BOOK FOR KID’S to schools, epilepsy charities, to hospitals and to families who need them. 

You can buy the book on AMAZON here : https://www.amazon.co.uk/Epilepsy-Book-Kids-Layla-Reid/dp/1842890190 , or at Waterstones Bookstore in the UK here : https://www.waterstones.com/book/epilepsy-book-for-kids/layla-reid/9781842890196

Sarah continues..

Recently, I was in contact with a lady called Sarah from South Gloucestershire council who found the best was to get my daughter’s epilepsy book to schools was through the school’s nurse’s. I took all the epilepsy information packs to the kingswood hub where the school nurse’s loved them and thought they were a great way to raise epilepsy awareness and money in schools!.

Bristol University Neuroscience Festival 2018

Bristol University Neuroscience Festival 2018

Bristol University Neuroscience Festival 2018

Friday 23rd March  – 4:00 pm to 6:00 pm  – Great Hall, Wills Building, Park St

Come and talk to scientists, investigate interactive exhibits and hands-on activities lead by scientists, explore the ‘Evolution of the brain’ and ‘Brain Art’ exhibitions and much more. Find out about current Neuroscience research through state of the art research posters.

Friday 23rd March  – 6:30 pm to 8:00 pm  – Victoria Rooms, Bristol University

Plenary lecture with Paul Howard-Jones: ‘The prehistory and future of the learning brain: How did we get this smart and what next?’

CLICK HERE TO BOOK YOUR FREE TICKETS

How does learning transform us biologically? What learning processes do we share with bacteria, jellyfish and monkeys? Is technology impacting on brain evolution?

These are just some of the questions explored on a fascinating journey through 3.5 billion years of brain prehistory.

Along the way, we discover:

  •  how the E. coli in our stomachs learn to find food
  •  why a little nap can help bees find their way home
  •  the many ways that action, emotion and social interaction have shaped our ability to learn and
  •  the central role of learning in our rise to top predator

Finally, this trek through time will lead us to ask: Faced with the unprecedented challenges of the 21st century, will evolution lead us to enhancement or extinction?

Saturday 24th March 2018 10am to 5pm , Great Hall, Wills Building, Park St

FREE Entry !

For all the public talks for which you need to book for, PLEASE CLICK HERE

For the event’s programme, PLEASE CLICK HERE to Download the PDF

Epilepsy Survey for Women

survey20meme

  • New survey launched to find out how aware women and girls are of the risks around sodium valproate
  • ​Data will be presented to public hearing into the medication in September
  • Last survey showed 20 per cent  of women taking sodium valproate were not aware of the risks
  • Take part in our survey and help provide vital information for public hearing

Are you a woman or girl under the age of 50 with epilepsy? We are trying to find out how aware women are of the potential risks around the epilepsy drug sodium valproate, if taken during pregnancy.

Take part in the Epilepsy Society survey, click this link > our survey < now, and help provide vital information for the public hearing into sodium valproate in September!

In conjunction with Epilepsy Action and Young Epilepsy, we are launching a survey  to find out whether women and girls of childbearing age are receiving the right information about sodium valproate.

Data from the survey will be presented to a public hearing into sodium valproate being held in London by the European Medicines Agency on 26 September.

What are the risks?

Up to 10 per cent of babies exposed to sodium valproate in the womb are born with birth defects and up to 40 per cent have a risk of neurodevelopmental disorders.

However for some women, sodium valproate will be the only drug that will control their seizures and it is important that women are given the right information about risks so that they can make an informed choice about their treatment in conjunction with their doctor.

Women should never stop taking their medication but should always seek the advice of their doctor over any concerns.

MHRA toolkit

In February last year, the MHRA (Medicines and Healthcare Products Regulatory Agency) launched a toolkit to increase awareness of the risks. The toolkit includes a credit-sized patient card to be issued by pharmacists and a booklet with key questions and discussion points for women and healthcare professionals.

In April 2016 we launched a first survey that showed that almost half of women with epilepsy were unaware of the risks around sodium valproate, and 20 per cent of those who were taking the medication were not aware of the risks during pregnancy.

Now, almost 18 months later, we want to find out whether more women are being given relevant information and whether they are having an informed discussion about sodium valproate with their healthcare professional.

Please take a moment to fill in the survey and also share it with family and friends so we can reach as many women with epilepsy as possible.

Thank you.

Find out more

Read the guidelines around sodium valproate.

Video: Dr Rami Apellian, Epilepsy Epileptologist and MD

Sam Downie interviews Dr Rami Apellian, Epilepsy Neurologist and Epileptologist.

Interview recorded at Epilepsy Awareness Day and Expo, at Disneyland Resort, 2016.

Watch the TALK from Epilepsy Awareness Day and Expo 2016

Visit his website at : www.DrRamiApelianmd.com/