Bristol Epilepsy Social Support GroupHello, 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.
Our meeting schedule can be added to your online diary, just click this link :
https://calendar.google.com/calendar?cid=YnJpc3RvbGVwaWxlcHN5QGdtYWlsLmNvbQ
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
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
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:
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.
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.
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.
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.
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.
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.
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
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.
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.
