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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.

Categories
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
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.

Categories
epilepsy Media news

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!.

Categories
epilepsy Epilepsy Awareness Day and Expo at Disneyland events Media news

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/

Categories
epilepsy Epilepsy Awareness Day and Expo at Disneyland events Media news

VIDEO: Dr Mona Sazgar, Epilepsy Epileptologist

Video from Epilepsy Awareness Day & Expo at Disneyland Resort, November 2016.

Dr Mona Sazgar, Epilepsy Epileptologist, OC, USA

Categories
BBC News epilepsy Media news

News: Pregnant Women ‘Unaware’ of Epilepsy Drug Risks

Updated: 27th Feb, 2013

Watch on BBC iPlayer, BBC Inside Out London : Dr Rosemary Leonard asks if GPs are failing to warn their pregnant patients about the risks of one of the UK’s most widely-used epileptic drugs.

Link to Watch BBC iPlayer : http://www.bbc.co.uk/iplayer/episode/b01qzfrp/Inside_Out_London_25_02_2013/

[hr]

From BBC London NEWS : http://www.bbc.co.uk/news/uk-england-london-21523434
By Zack Adesina – BBC Inside Out, London

Concern is growing that mothers-to-be are not aware enough of the dangers of an epilepsy drug known to cause severe abnormalities in foetuses.

Sodium valproate has long been known to increase babies’ risk of cleft palate and spina bifida.

Now new research has revealed some babies exposed to the drug also have mental problems and a survey found 25% of mothers were unaware of the risks.

The drug’s manufacturers insist they have always warned of the dangers.

Sodium valproate is one of the most effective drugs for controlling epileptic seizures.

But it presents risks if taken by expectant mothers, with an increased chance of physical deformities.

Dr Peter Turnpenny, consultant clinical geneticist at Royal Devon and Exeter Hospital, said: “We know the risk of physical birth defect is certainly 10%.

“The increased risk of spina bifida is 20 times higher than in the background population.

“I am still seeing young children – sometimes babies – who clearly appear to be damaged by exposure to these drugs.

Birth defects

As a GP with 24 years of experience I believe the warnings on this leaflet are inadequate.

Dr Rosemary Leonard

“Many of them have residual problems well into their teens and early adult life and some of them will undoubtedly not be able to lead independent lives.”

A new study has found 12% of babies exposed to the drug in the womb could have mental disorders.

Speaking for the first time, its author, neuropsychologist Professor Gus Baker, said: “We followed up 600 from birth to six years of age.

“We found out that children exposed to sodium valproate were at a greater risk of intellectual delay, memory problems, language difficulties and behavioural problems.”

The new report concludes children born to mothers on sodium valproate are six times more likely to be diagnosed with disorders such as autism.

Emma Murphy with one of her daughtersEmma Murphy, who has epilepsy, has given birth to five children with health problems she believes were caused by sodium valproate.

Mrs Murphy feels she was never warned about the dangers by either her doctors or the drugs company.

She told the BBC’s Inside Out London: “Symptoms my children experience are autism, cerebral palsy, deafness, incontinence, mobility issues and constant aching in their body.

“It wasn’t until I was through my fourth pregnancy that I found out about the effects of Epilim (sodium valproate).

Emma Murphy, who has epilepsy, says her children have a range of disabilities

“As a mum you do have the guilt trip.”

Mrs Murphy’s experience is not unusual. Charities working in the sector estimate that globally thousands of children may have been harmed.

National guidelines insist all women of child-bearing age with epilepsy should be informed about the risks the drug may have on an unborn baby.

But 20 years after concerns were raised about the drug, a new study has revealed some GPs are failing to alert patients.

Reduced IQ points

Nicole Crosby-McKenna, of Epilepsy Action, said: “We did a survey of women with epilepsy and asked them about the information and counselling they receive about pregnancy.

“Over 20% of those women hadn’t received any information in connection with pregnancy.”

Professor Matthew Walker, head of the epilepsy department at the National Hospital for Neurology and Neurosurgery, said: “The evidence has become stronger – foetal exposure to valproate knocks somewhere between seven to 10 IQ points off the child.

“I’m finding a lot of women are not being warned about the potential risks of valproate.”

Sanofi, the company that markets the drug under the brand name Epilim, has always denied liability for any birth defects.

But campaigners claim the company’s warnings have always lagged behind research.

Janet Williams, of pressure group In Fact, said: “There were a lot of research papers out in the 80s and 90s when they said there was such a thing as valproate syndrome.

[We] regularly review and make changes to core safety information in the light of emerging data that could have an impact on the safety profile of valproate” – Sanofi spokesmanPharmaceutical company

“But it wasn’t until 2005 that they actually changed the leaflet.”

A spokesman for Sanofi said: “[We] regularly review and make changes to core safety information in the light of emerging data that could have an impact on the safety profile of valproate.

“The product information made available to doctors by Sanofi in relation to sodium valproate has at all times since the product was first marketed in the early 1970s contained a warning of its teratogenic [abnormality-causing] potential.”

The current leaflet provided with another brand of the drug, made by Wockhardt, clearly highlights risks to any unborn child including spina bifida, congenital abnormalities and delayed development.

But GP and broadcaster Rosemary Leonard said: “As a GP with 24 years of experience I believe the warnings on this leaflet are inadequate.

“There is no specific mention of long term learning difficulties, of low verbal IQ or autistic spectrum disorders.

“Reading this, a potential mother-to-be may well not realise the severe and extensive potential side effects that this drug can have.”

A spokeswoman for Wockhardt said: “We consider that in the leaflet the patients are adequately warned.

“The patient information leaflet for sodium valproate has been approved by the medicines and healthcare products regulatory agency.”

Health experts say women with epilepsy who are pregnant should not stop their medication but consult their GP or epilepsy specialist.

See more on this on Inside Out on Monday 25 February on BBC1 at 19:30 GMT.

Categories
epilepsy Health Media news

Warning over cuts to free bus pass for disabled in the uk

News from AGE UK website:

www.ageuk.org.uk/latest-news/warning-over-free-bus-pass-funding/

Urban transport authority bosses have issued a warning about funding for the free bus pass for disabled , and elderly.

Transport chiefs from the country’s largest provincial cities say funding the scheme means spending on other transport services could face a cut of 75% in 10 years’ time because although state funding is being reduced, costs are increasing.

Bosses from passenger transport executives in Greater Manchester, Merseyside, South Yorkshire, Tyne and Wear, West Midlands and West Yorkshire have now written to Transport Secretary Patrick McLoughlin to call for more central Government funding.

They say Government funding for providing the bus passes will be cut by 27% by 2014-15, despite the fact the cost of paying for it is rising.

Funding the scheme is said to now take up around half of all spending by the regional transport executives.

The transport bosses insist they have little influence over costs, while being legally required to fund it.

Because general funding for transport is also being slashed, the authorities insist the rising cost of the free bus passes means money supposed to be for other areas is having to be used. By 2022 they say frontline service funding is likely to be cut by three-quarters.

But David Wood, who chairs the group of six transport authorities, said the concessionary travel benefit for disabled and older people is hugely successful and that people want it to be maintained.

He added: ‘However, it cannot be right that the cost of providing what is a national statutory scheme, determined by national government, should create such a heavy funding burden for transport authorities in a way that threatens the future of the services that we provide for all members of our communities, including older and disabled people.

‘There will be little point in a free pass if the bus services that older people are using have to be withdrawn to pay for it.’

Norman Baker, the transport minister, insisted:

Last year we put in place reforms to help local authorities cut the costs of concessionary travel schemes and these reforms are already starting to take effect.

© Press Association 2012

Categories
epilepsy Media news

Sarah Reid: How my Daughter Layla (age 7) wrote a book

Epilepsy for Kids - Book CoverSarah Reid (Bristol Epilepsy Support Group member) explains how her seven-year-old daughter Layla has written a book, “Epilepsy for Kids”, for children who have a family member with Epilepsy,

Epilepsy for Kids by Layla Reid, published by Pomegranate Books, Bristol £6.50 (p&p free for limited period).

(or CLICK HERE – to buy Epilepsy for Kids by Layla Reid , on Amazon )

“I had been hunting high and low for ages to find a book explaining epilepsy to my seven-year-old daughter Layla. I have come across so many books aimed at children who have epilepsy and adults who have epilepsy – but nothing for a child who has a family member with epilepsy.

Layla has witnessed me having seizures many times. At the worst point I was having five seizures a day.

I remember her getting so upset at times when I have been semi-conscious that I felt like crying. On one occasion I had a seizure at my parents’ house. I was surrounded by paramedics. My dad was trying to reassure her in the kitchen as she was screaming for me. I just wanted to run and tell her “It’s ok. Mummy’s here”. But I couldn’t, as my body wouldn’t do what I wanted it to do.

I feel useless at times and want Layla to understand why I can’t always do the things that mummies are supposed to do, like baking cakes together when we’re on our own or preparing the tea. Last time I tried I had a seizure and my husband Mark came home to a kitchen full of smoke. The thought that I could have set the house on fire and hurt Layla fills me with horror. I would have never forgiven myself.

I want Layla to understand why I can’t drive, why I always have to rely on others for lifts and why I can’t have a bath or shower when I’m on my own. I want her to understand why I worry about my clothes and whether anyone can see the incontinence pads which I wear in case I have a seizure and lose control of my bladder. This can be very upsetting and embarrassing.

I really hoped that finding a book to explain epilepsy would help Layla to understand these things.

Then I noticed that Layla was carrying around a notepad and pen. Inside she had drawn pictures and written about me and my seizures. It was things like, “Mummy has written front and back door on her keys so I can open the door and let the ambulance people in.”

That was when it struck me that perhaps Layla could write a book for children who have a parent with epilepsy.

Seeing the book now makes me so happy and proud of Layla. Each page has a simple drawing and explanation in Layla’s own words about how seizures affect everyday life. I hope it will let other children know they are not alone. I hope that by explaining about seizures it will help them to cope.

Since the book has been published I have met some amazing people, many of them with epilepsy, and some who have friends or relatives with epilepsy. One lady said she wished Layla’s book had existed when she was a girl as her brother has epilepsy and his seizures used to terrify her. She didn’t know what they were or what to do.”

The media has shown an incredible amount of interest in the book, both locally and nationally, and with the help of the Bristol Epilepsy Support Group and Epilepsy charities in the UK, such as Epilepsy Society and Epilepsy Action, I am confident we can do a lot to raise awareness about epilepsy.

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Epilepsy for Kids by Layla Reid, published by Pomegranate Books, Bristol £6.50 (p&p free for limited period).

(or CLICK HERE – to buy Epilepsy for Kids by Layla Reid , on Amazon )