Bristol Epilepsy Social Support Group
Join 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
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.
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/
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.
More information on the conference can be found at : https://www.epilepsy.com/node/2070606
Times are pacific standard time (PST).
Moderator: Daniel Friedman MD, Associate Professor, Department of Neurology, NYU Langone Medical Center
Moderator: Karen Wilcox PhD, Professor and Chair, University of Utah, College of Pharmacy
Moderator: Karen Bergman, Vice President, Investor Relations and Corporate Communications, FibroGen, Inc.
Moderator: Kimford Meador MD, Professor, Department of Neurology and Neurological Sciences, Stanford University School of Medicine
Co-Moderators: Jacqueline French MD, Chief Scientific Officer, Epilepsy Foundation, and John O’Hurley, Actor, Philanthropist
Moderator: Brandy Fureman PhD, Vice President of Research and New Therapies, Epilepsy Foundation
Moderator: Deborah Hirtz MD, Professor, Neurological Sciences and Pediatrics, University of Vermont School of Medicine
Moderator:& Josef Parvizi MD, PhD, Professor, Department of Neurology, Standford University Medical Center
Moderator: Pavel Klein MD, Director, Mid-Atlantic Epilepsy and Sleep Center
Moderator: Pavel Klein MD, Director, Mid-Atlantic Epilepsy and Sleep Center
Times are pacific standard time (PST).
Share, listen, and learn through people’s lived exeperience with epilepsy.
Key concepts and new ideas about epilepsy
What’s new and what’s coming in the epilepsy pipeline
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:
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:
Breakout Class 3: Seizures and Your Life: Emergencies, Alerts, Tools, & Family
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:
Moderator: Jody E. Iorns, Epilepsy Foundation Northern California
Panelists:
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:-
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/
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 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.
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
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!.
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.
Plenary lecture with Paul Howard-Jones: ‘The prehistory and future of the learning brain: How did we get this smart and what next?’
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:
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?
FREE Entry !
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.
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.
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.
Read the guidelines around sodium valproate.
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/
Video from Epilepsy Awareness Day & Expo at Disneyland Resort, November 2016.
Dr Mona Sazgar, Epilepsy Epileptologist, OC, USA
