ECA is a non-profit Foundation that offers free services to assist not only those affected by Epilepsy - but also to Charities, Organisations and other groups who support Epilepsy through services, fundraising or research.
public service outlines
A FREE GLOBAL NETWORK:
If you have Epilepsy and need support? It doesn't matter where you are in the world or how specific your needs are... ECA can find someone to suit your needs. The purpose of our vast Global Epilepsy Foundation database is so we can direct enquiries from ANYWHERE in the world (now matter HOW SPECIFIC the question might be?)... to a great support network in your region.
No messing about worrying "can they help me in my area?" or "will these people charge money?" or "can they help with my EXACT Epilepsy issue?" If you contact ECA then YOU WILL GET SUPPORT FOR FREE IN YOUR REGION FOR YOUR NEEDS.
SUPPORTING THE SUPPORTERS:
We also understand it is not just "the people with Epilepsy" that need support. Those who have loved ones like Partners, Parents, Family, friends & so forth that watch us go through Epilepsy also share a huge burden. That is why ECA strongly believes THOSE WHO SUPPORT LOVED ONES WITH EPILEPSY DESERVE SUPPORT.
It means people from anywhere in the world can access online support - even on complex topics as we are EPILEPSY SPECIFIC - but we can ALSO promote Awareness, Medical Research & Social issues from around the world relating to Epilepsy via the ECA foundation and our many ECA Connections. Our work expands from Australia to Africa, India, Middle-East, USA, Sth. America, UK, Europe, Indonesia and most other places in the world. We ACTIVELY seek out Charities from every part of the planet to make ECA a larger and more accessible Epilepsy network to the ENTIRE world.
FREE ACCESS TO GLOBAL EPILEPSY CHARITIES, SUPPORT FOUNDATIONS & MEDICAL ORGANISATIONS:
YOU can access the free ECA services OR contact the foundations listed via the ECA worldwide network. The "ECA Connections" who actively work with us / use our services / are shown on our website are only an TINY portion of the overall ECA database... however we can hardly list hundreds of Organisations for you sort through can we lol?!
That is why ECA lists "active ECA Connections" PLUS a cross-selection of our wider global Connections & charities that participate in ECA via our "Public Network". HOWEVER ECA has hundreds of organisations listed via region & specific purpose so IF YOU NEED HELP IN YOUR COUNTRY? ABOUT YOUR EPILEPSY ISSUE? ECA EITHER LISTS HELP OR YOU CAN CONTACT US VIA ENQUIRY & WE WILL SEND YOU MULTIPLE OPTIONS FROM OUR DATABASE TO CONTACT DIRECT YOURSELF.
(Page quote) "We are here to educate the public using factual information regarding epilepsy. It could be for your friends, family, employers, the media - and maybe even you! Don’t be afraid. Lack of knowledge induces fear and we are here to turn that around. We are here to educate, make those affected by epilepsy feel less alone and even laugh upon occasion! Friendly, funny and factual comments are more than welcome. 📷😀We have a global following on our blog: www.epilepsysparks.com. Check us out.
Note: Friendly, funny and factual comments are welcome. We do not however accept any comments or claims regarding celestial beings. As with the websites and blogs of other professional organisations, we do not accept any comments or claims that are negatively discriminatory, inaccurate or that could encourage negative feelings within others.
Comments about self-harm and/or suicide can encourage others to harm themselves and so will be removed. Those making these comments will be warned by an Admin and should it occur again, will be blocked from the page.
We are not Epileptologists or Neurologists and so any information that we provide or which you perceive to be as advice, should not be acted up until/if you gain approval from your Epileptomologist or Neurologist.
Let's talk and laugh when possible!!
UK - International Epilepsy foundation - Torie Robinson: CEO & Founder / Publc advocate / Speaker
Epilepsy Sparks Foundation
Based in Africa, the Kiserem Epilepsy Foundation was established in 2016 and works tirelessly to improve awareness and conditions for those living with Epilepsy. It's founder - Fred Kiserem - is a passionate campaigner for improved conditions and research into Epilepsy based causes and has worked with numerous international bodies - including the UN - on fundraising and other campaigns. Fred Kiserem and his team often do lifesaving work and was one of our own Founder's personal inspirations when starting ECA.
Kenyan Epilepsy Charity - Fred Kiserem: Founder / CEO / Support service / African charity
Kiserem Epilepsy Foundation:
The Brainstorming Epilepsy Festival Foundation and subsequent "Brainstorming Epilepsy Festival" campaigns are based around the core principles of Awareness and empowerment. We seek to provide more information to the general public to smash the myths and stigmas that still exist about this condition, even in today's modern world. By doing so, we also hope to provide a platform for greater acceptance of those suffering the condition, help others understand what they go through on a day to day basis, and destroy the common barrier of isolation that all too often stands in front of those suffering from Epilepsy.
Based in Los Angeles, USA - our group does a lot of work within the community but a huge focus of our efforts are online using international Awareness campaigns as a tool to enlighten and support others. We are a 100% non-profit organisation & not supported by any corporate or government entities - but do work in conjunction with other international Epilepsy Organisations on certain joint campaigns and efforts. Our foundation is also registered with, and fully supported by, the Epilepsy Connections Affiliated (ECA) international Epilepsy charity organisation - giving us greater access to online services and connections with other like-minded charities from around to world to help support our cause.
San Francisco / USA Awareness foundation: Stacii Floyd - Founder / Public advocate / Support service
Brainstorming Epilepsy Festival
A Quote from our Founder and CEO Dr. Prince Kazadi:
"Hello dear all... our association against the stigmatisation of epilepsy in the Democratic Republic of Congo has as battle song - the education of the population on the knowledge of epilepsy because this disease is very poorly known. people suffering with epilepsy are almost abandoned to their plight and often victims of social discrimination, educational blocks, professional discrimination and ESPECIALLY children. All this leads to consequences of a life lacking fairness or opportunity.
people often suffer from epilepsy in my country because epileptics can not study or work and this disease is dogged by myths - religious & social -and is considered a curse or bad luck. The few epileptic children we have tried to support are up to our total load, and have not had much luck gaining school supplies so far. this deprives us here at ASLEK of sleep for we care so much... and we just ask all who can help us, to support us for the good of those who have the right to life. we say thank you in advance."
Dem. Rep of Congo: Epilepsy Charity - Dr. Prince Kazadai (Neurologist) Founder & CEO / Advocate
ASLEK: epilepsy in dem. rep. of congo
(Page quote) "The Epilepsy Shield Project was started in 2015, the goal of this project is to spread awareness of and information about epilepsy with use of my artwork I know that the colors of some of the paintings maybe too bright for some people with photosensitive epilepsy and I am sorry for that. My goal is to use the colorful imagery to attract attention because people do not read shirts and other items with one color writing nearly as often as shirts with bright colors that catch the eye, creating awareness. Each series of paintings has a different theme for the paintings and the subject of the paintings range from very educational to just funny. The pictures and post from the page can be freely shared to help spread awareness.
UK - International foundation - Chris Arneaux: CEO & Founder, Awareness, Support, Advocate, Artist.
The Epilepsy Shield Project
Epilepsy Foundation India is a non-profitable charitable organization dedicated towards the welfare of the millions of people suffering with epilepsy in the India and their families. Founded by Dr. Nirmal Surya in 2009, as a result of his passion, determination and efforts to help the less fortunate patients in Mumbai, Maharashtra; the initiative has over the last few years grown to a national scale.
Our team is constantly striving to ensure epilepsy patients participate in all walks of life. We work to improve how people with epilepsy are perceived, accepted and valued in society and to promote research for a cure. Our foundation conducts Free Epilepsy diagnosis and treatment Clinics and camps under Dr. Surya’s leadership at various places in Maharashtra, Gujarat, Rajasthan and Madhya Pradesh, where the patients were identified and subsequently treated free of charge.
India & International - Dr Nirmal Surya: CEO & Founder - Support, Advocate, Research, Public services
Epilepsy Foundation India
The Epilepsy Centre is a professional organisation committed to providing quality, caring services to people living with epilepsy and improving community awareness and attitudes. The Epilepsy Centre has been the leading provider of epilepsy services in South Australia and the Northern Territory since 1976, and are dedicated to providing high quality support, counselling, training, practical assistance and advocacy on behalf of people with epilepsy. We also work continuously to raise awareness of epilepsy in the community to reduce stigma and create a more welcoming and inclusive society.
The Epilepsy Centre receives no government funding and is largely funded from private sources, mainly philanthropic donations. If you would like to help you can donate or you can support our work in a variety of other ways. Please view our Donation, Membership and Volunteer sections for more information. The Epilepsy Centre is a member of Epilepsy Australia, the national coalition of state-based epilepsy associations and the leading consumer-led epilepsy body in Australia. Our hope is that all Australians living with epilepsy, as well as the medical profession, allied health workers, principals, teachers, employers and the wider community will find this website to be an informative and valuable resource in their daily lives.
Australian foundation - Public Awareness and support service, Research organisation and fundraiser
The E?!LEPSY Centre
Most likely the largest Epilepsy organisation in the world - the "Epilepsy Foundation" is an international organisation that also runs individual franchises in almost every country on the planet. So not only do they work on an international scale, they have an "Epilepsy Foundation Australia" and an "Epilepsy Foundation UK" / "Epilepsy Foundation USA" / "Epilepsy Foundation Brazil" / "Epilepsy Foundation Nigeria" and every other one you can imagine.
They cover every aspect of Epilepsy: Support, Awareness, Services, Advocacy, Research, Medical lobbyist, Government participation - you name it... if it has to do with Epilepsy - they are on the forefront. This is a great place to look from anywhere in the world - no matter what topic or specific question / need you might have relating to Epilepsy. The drawback on the other hand is some people might find the enormous scale of what they do somewhat complicated and a little daunting and subsequently find it hard to navigate through their immense range of services and features.
ECA suggest people go to Epilepsy Foundations INDIVIDUAL COUNTRY BRANCH relating to their location online. So if you are in USA add a ".us" to the link / in Britain add a ".uk" to the link / in Australia add a ".au" to the link etc... ECA has provided the international link (simply click on the logo to left) but you can just add your country code to that URL address to be diverted to the individual country branch of Epilepsy Foundation.
International foundation - Branches in almost every country, largest Epilepsy foundation in world
The Epilepsy Foundation (international)
Page quote: "I’m so glad you stopped by Living Well With Epilepsy (LWWE). LWWE was founded by me, Jessica Keenan Smith, back in 2009. I was diagnosed with epilepsy at around age 12, but I wanted the site to be more than my own personal blog. I hoped the site would become a resource the millions of other people living with epilepsy like me. So, from the beginning I shared information on epilepsy and stories I hoped others might find helpful. Over time, the site has grown into a place where people living with epilepsy now feel comfortable sharing their own personal stories.
Since 2013, the LWWE writing team has grown to include writers who are also living with epilepsy from around the world. Living Well With Epilepsy is all about living your best life, whatever that looks like to you! We have shared hundreds of articles on every facet of living with epilepsy. We generally cover health trends, healthy lifestyle, and what it is really like living with chronic illness as seen through the real life personal stories of those living with epilepsy. We hope you will find something useful and consider sharing your own story."
International Foundation - Public submission and Epilepsy story publication service.
Living Well with Epilepsy
EuroSciCon is one of the worlds largest Medical Conference providers who coordinate events across all fields of medical research (Neurology, Psychology and Epilepsy in particular) in almost every country on the globe. They accept submissions from Medical professionals, Charities, Corporpate bodies and Social research entities to provide a huge variety of information from varied sources.
Page quote "Euroscicon (www.euroscicon.com) is run by a team of dedicated professionals working for the continuous improvement of knowledge transfer between life scientists. We believe that we can make a positive difference to the quality of science by providing cutting edge information on new advancements to the scientific community. This is provided via our exceptional services to individual scientists, research institutions and industry.
We don’t restrict access to any part of our event to any type of delegate. Our aim is to get people talking; everyone who has registered for the event is free to talk and encouraged to interact with everyone who is there. We encourage participation and collaboration between scientists of all levels and in different parts of industry/academia The Euroscicon environment allows for plenty of discussion and networking, with lots of breaks, poster sessions, plenty of good food, great coffee and cakes and structured Q and A sessions.
We encourage scientists early in their careers to present their work . Delegates are encouraged to submit abstracts for poster and oral presentation and we have poster prizes and certificates for presentations. We also do not restrict our invited speakers to high-end scientists , but invite from a broad range of expertise and levels. This ensures that delegates get to hear talks that may not be presented to larger events" (end quote)
International Medical conference provider - Global leader in academic research events & conferences
EuroSciCon Lifescience communication
Lowell G Evans is the writer of the popular book "The Village" in which a man who is diagnosed with Epilepsy has his community rally around him to support him in his battle with Epilepsy and inequality. Lowell himself is also an avid supporter of numerous Epilepsy support campaigns and foundations, based in Virginia in the USA, but with numerous links to the UK too. A great connection who is plugged into numerous causes across the USA and Britain on top of his own great writing.
(Book review) "Kevin Bolden was a man sure of many things but when his corporate job found out that he was diagnosed with epilepsy, the fate of his career and family became questionable. Once The Village, Kevin's neighborhood, got a whiff of the inequality and unsatisfactory response of his job, they felt an obligation to rally together in efforts to help save his lifestyle and others that could be affected by the unfairness. For him, dealing with epilepsy was one thing, but getting people to understand the effects that it has on the person and their environment was a battle in itself. It would take a Village to win his life back. Kevin Bolden has epilepsy, but epilepsy does not have him; especially with the help of The Village!"
UK - Lowell G. Evans: Writer, Epilepsy advocate, Public speaker, Lobbyist.
Lowell G. Evans - writer of "The Village"
In the U.S. News & World Report rankings of top hospitals, Mayo Clinic is the No.1 hospital overall and No.1 in more specialties than any other hospital in the nation. Complex care often requires medical experts from more than one specialty. Mayo Clinic's world-class experts work together to provide comprehensive care and an extraordinary experience for patients with even the most complex conditions.
"Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness. Anyone can develop epilepsy. Epilepsy affects both males and females of all races, ethnic backgrounds and ages. Seizure symptoms can vary widely. Some people with epilepsy simply stare blankly for a few seconds during a seizure, while others repeatedly twitch their arms or legs. Having a single seizure doesn't mean you have epilepsy. At least two unprovoked seizures are generally required for an epilepsy diagnosis. Treatment with medications or sometimes surgery can control seizures for the majority of people with epilepsy. Some people require lifelong treatment to control seizures, but for others, the seizures eventually go away. Some children with epilepsy may outgrow the condition with age."
USA - Hospital and World leader in Epilepsy research
Page Quote: "Austin Life Sciences (ALS) brings together over 800 innovative researchers at Austin Health’s vibrant research precinct who are turning science into health. It includes Hospital and University of Melbourne Departments and Independent Institutes:
University of Melbourne Departments of Medicine, Surgery, Psychiatry, and Physiotherapy
The Florey Institute of Neuroscience and Mental Health
Olivia Newton John Cancer Research Institute (ONJCRI)
Institute for Breathing and Sleep (IBAS)
Parent-Infant Research Institute (PIRI)
Spinal Research Institute
Mercy Hospital for Women
Austin Medical Research Foundation (AMRF)
The multidisciplinary alliance consists of world class scientific leaders conducting research in: Cancer, Neurosciences, Transplantation including xenotransplantation, Heart disease, hypertension, Immunology, Infectious Diseases and Microbiology, Endocrinology, Sleep disorders, Improving the well being of people living with spinal cord injury.
Not only is this one of the world leading hospitals in Neurological and Epilepsy research, it's wide ranging field base covers many related topics and links to valuable and informative research articles."
The Austin is a world leader is both independent and collaborative research into fields of Neurosciences directly impacting Epilepsy that ECA is proud to support.
Australia - Hospital and World leader in Epilepsy research
Austin Health Neurological research
Page Quote: "More than half a million people in the UK have epilepsy and one third have seizures that cannot be controlled through available anti-epileptic drugs. There are 1,000 deaths from the condition every year, including many children and young adults. Epilepsy can have a devastating effect on people and their families, affecting all aspects of their lives.
Epilepsy Society is the UK’s leading provider of epilepsy services. Through our cutting edge research, awareness campaigns, information resources and expert care, we work for everyone affected by epilepsy in the UK.
Our research is driven by the desire to understand what has caused the epilepsy in each individual person, to be able to identify the best therapy from the outset, and to make this expertise widely available."
UK - Charity, Public Awareness & Support group, Epilepsy advocacy organisation
Epilepsy Society UK
Surge Laboratories is an active research based pharmaceutical company with a strong basis in Neurological research (often supporting the Neurological Society of Pakistan) and has become a world leader in both research and production. They have a vast library of medical posts relating to many medications often used in neurological treatment and also regularly post live forums from medical professionals and researchers on current trials and possible new treatments. Our CEO regularly attends online forums from research professionals on new medical treatments being developed for Neurological purposes. (ECA notes this is a more technical site best suited to our Medical Connections as opposed to the general public).
Pakistan - Pharmaceutical and Neurological research leaders, public advocates
This group was started by Epilepsy Seizure Awareness to create a support environment for those living with Epilepsy but also with a focus on supporting family, friends and loved ones who also have to deal with the follow on effects of Epilepsy and how it effects all those around. With close to 7,500 members over a worldwide base this is another of ECA's recommended connections as the active admin team, caring membership base and wide ranging experiences of those members make this a great place to get advice on Epilepsy and how it effects us in the real world, especially if you're only just coming to terms with new diagnosis.
Facebook - social media support network.
This group was started by Jenifer Ann living in Western Australia - she has been a lifelong supporter of Epilepsy causes and now runs her own support page for those living with Epilepsy and to promote other worthy causes too. Jenifer Ann has a very personal approach to supporting those with Epilepsy and has an open forum, inviting the public to contact her for assistance with support relating to Epilepsy.
Jenifer is now a passionate advocate and campaigner for Epilepsy awareness in Australia and works in the public forum often working with media and social entities to raise awareness and funds for the condition.
Western Australia - Support service, Public advocate, Awareness and campaigner for Epilepsy
Jenifer Epilepsy Page
With over 12,500 members the "EPILEPSY" Facebook support group is one of the largest online discussion formats currently available. Their member base includes people from all over the world and there is often very valuable discussions on complex topics such as specific medications and direct seizure types. Again - one of the advantages of such a large member base is access to so many different experiences and sources of information. Our founder has been a member of this group even before ECA was founded and has found it to be a supportive and caring group, well worth a look especially if you are looking to find more specific information.
Online via Facebook - official public support forum for Epilepsy support and discussion
The "Epilepsy Facebook support group"
(Page quote) "THIS IS NOT A SERIOUS EPILEPSY GROUP. Before requesting to join, read the entire group description below, as this group may not be for you. This group is NOT for you if... * You don't have a sense of humour about your epilepsy. * You are easily offended at jokes, sarcasm and other dark humour. * You cant respect other peoples opinions during a debate. * You wish to discuss alternative treatments that are illegal in the UK. * You are looking for serious support. * You aren't willing to participate in the group. * You are under 18 years of age.
This group IS about... * 100% support to Epileptics and carers, but in a light hearted fashion. * Zero tolerance to bullying, drama queens and attention seekers. * Offering members a place to chill out and have banter with each other. * Supporting debates but not arguments as they can escalate. * Proving that Epilepsy does not have to consume your life. We laugh in the face of Epilepsy and it's associated issues, as we believe laughter is the best medicine. We are very direct with this approach and a strong sense of humour is needed. You could say its offensive. Members give us feedback and don't want a place where people confront, complain and are self absorbed as it brings the atmosphere down to the same as any other group. There are some great support groups on the internet but operate totally differently to we do, they may suit you better if this is not the group for you. Full group rules in files section, updated May 2015."
Online via Facebook - 18+ Humour group, only those wishing to make light of their condition advised
Epilepsy Chit Chat
We are here because we have seizures, and need a place to laugh at ourselves. Just a bunch of spazzes having a laugh. Rules: 1) No direct attacks at people. That is all. If you are offended please leave, we are not interested in your butt hurt. **By the ways, please feel free to share serious support here too. We may make jokes, (especially when it's most serious) but we are all just trying to find a smile. We are just all here to try and support each other, through love, through humor, through any damn means necessary. No one should fight this alone. Love and Laughter to all!!! Keep Scrolling Rule *Amendment 1 to "No Attacks": "No Attacking" refers to attacks on specific people or specific groups. Additionally, If in any way your statement is considered challenging, condescending or argumentative it may be considered hostile & it's advised against. IF YOU SEE A POST YOU DISAGREE WITH, DO NOT COMMENT ON IT. MOVE ON. Don't take someone else's feelings as a personal attack. If a member is not attacking a specific person or group of persons, they are just venting and they are welcome to do so without your criticism.
Online via Facebook - 18+ Humour group, only those wishing to make light of their condition advised
Seizures with a sense of humour
Based in the US, this is another of ECA's recommended connections due to the caring client base (of over 5,000) and the open nature of the group. It has an experienced an active admin team who are quick to respond to member enquiries. We have found this group to be very good on enquiries relating to US medical laws and insurance enquiries along with all other topics which it is very open to.
Page Quote: "Epilepsy Seizure Support Group has been established to support each other. Share what we learn from each other about this disorder. Also, so we can help each other make it through the rough days and rejoice in the good. Read the rules in the About section. "
Online support group - USA based Facebook support network
Epilepsy seizure support group
This group was started by tellmenow.com as a discussion forum for people living with Epilepsy. With over 4,000 members and an active admin team, it is a safe and supportive group to join where people can chat with others from around the world about their experiences and get advice on topics relating to Epilepsy. Much like ECA, this is a peer support based service and not run by medical staff - but the size of the member base allows for a great amount of input from a varying community worldwide with diverse experiences.
Facebook - social media support network.
Epilepsy Support Group
Page Quote - "Founded by empowered husband and wife team, Chris and Tiffany Kairos in 2011 after the sudden and unexpected seizure car crash that Tiffany experienced in 2008, The Epilepsy Network (TEN)'s mission is to provide awareness, education and support to each person affected by epilepsy. The organisation's essential mission is to provide better epilepsy awareness and education to the world! To continually seek out a cure and rise above the hardships faced with epilepsy. Whether you’re a medical professional, fighter, caregiver or supporter, we can share in the same journey together. In the beginning of The Epilepsy Network (TEN) founder Tiffany Kairos stated the message not only to herself but to the world, "Don’t let epilepsy defeat you, let it inspire you!"
USA Epilepsy Charity - Tiffany Kairos: Founder & CEO / Support service / Charity / Awareness foundation
"T.E.N. - The Epilepsy Network"
Page Quote - "This Group is for all Awareness for all conditions not illnesses, from Autism, Downs syndrome, Multiple sclerosis, Lupus, cerebral palsy, a.d.h.d. Epilepsy, asthma and many more. It's the only group I know of to help with any and all conditions, run by Group leader Jason Hughes, + 16 Awesome Admins." Based in the UK, its Founder Jason Hughes is an avid advocate for numerous disabilities and works tirelessly on numerous campaigns. A great place for our UK followers to check out (along with the rest of the world!)
Neurological Charity based in UK - Founded by Jason Hughes.
The Purple Lions group
Many Epilepsy based support groups are for those on specific types of medications. Medications for Epilepsy can vary greatly both in effectiveness and side effects, so many groups are based around discussions on those specific medications. Vimpat (pharmaceutically known as "lacosamide") is one of the new(er) medications currently in use for seizure treatments but is often somewhat intimidating to new patients as not as much is known about the side effects simply due to less discussion compared to other more common medications. This group addresses that issue by providing a supportive environment where people can ask others who have had experience with Vimpat enquiries and for advice.
Online support group - Focused on Epilepsy symptoms related to the medication "Vimpat" (Lacosamide)
Vimpat Support & Discussion group
Like the Vimpat group - this forum is based around support and discussion for those on the medication "Keppra" (or Levetiracetam). Keppra has been one of the very effective medications used in seizure control for serious and prolonged Epilepsy since it's introduction - however the side effects are often a point of debate, and can vary greatly depending on patients. The emotional effects are well documented with this medication, with mood swings and anger issue often experienced - commonly referred to in the community as "Kepprage" - along with a variety of physical side effects. This group is a great place to gain understanding into many of the effects people on this drug may experience as well as discussions on other medications used in combination.
Online support group - Focused on Epilepsy issues related to the medication "Keppra" (Leviteracetam)
Keppra Support group
Page Quote - "This a group for those who are dealing with epilepsy share what they do to face epilepsy. It can be through exercise, a hobby, anything that helps you deal with the physical, emotional, and mental pain that epilepsy can bring on. We are here as purple warriors to help encourage one another and help one another deal with having epilepsy." - this group runs regular discussions for it's members to take part in and find information and support.
Online via Facebook - official public support forum for Epilepsy support and discussion
Purple Warrior wellness
Page Quote - "This is a support group for individuals who have epilepsy or have a loved one with epilepsy. My name is Natalie and I have had epilepsy for 37 years now. Even though I have been seizure free for many years, I still face many challenges due to epilepsy. My goal is for this support group to become a strong support system for the epilepsy community. We all face different challenges due to epilepsy and need to be here for one another. We all come from different backgrounds and have different experiences due to having epilepsy. Please show your love and support for everyone who is a member of this group. We are here to help one another, not judge one another. Epilepsy can have many negative effects on someone's life and the goal is for us to all come together and not allow epilepsy to overtake us. Please feel free to post any events, research articles, or anything important regarding epilepsy to our page. This is not my group, but this is for all of us. Please feel free to reach out to me and I am happy to help in any way that I can. Let's do all we can to be a great community and not allow epilepsy to control our lives. Kind regards, Natalie Aswad Boehm Administrator.
Online via Facebook - official public support group, awareness foundation and public advocates
Here you will find a group of many with one thing in common: Epilepsy. We are a support group and friendly to all. Come here to talk about your day, your latest experience, even how listening to the birds chirp outside your window brings a smile, or that your favorite sports team making it to the finals is making your day. We love to talk about each others success stories! We're also here to help each other through the complexities our lives have developed (in large part, due to Epilepsy) However, there are a few ground rules we all need to know. We are not medically trained professionals. We are just like you! Anything that appears to be medical advice is stemming from our experiences. None of us should ever tell another that a diagnosis is wrong or that his/her own personal regime is better than another's. In fact, suggesting any changes to a medical regime (including, and definitely not limited to "take this medicine instead of that one because this one is terrible" or "there is no need to depend on pharmaceuticals because this remedy is better") is NEVER ALLOWED. if you're considering any changes in your current medical regime, discuss them with your neurologist. Advising other members to totally change their currently prescribed meds will get you booted.
Online multi-format platform: Public support, awareness, discussion and debate.
The "Epilepsy Support Group" online
Page Quote: "Epilepsy Awareness Group purposes & rules are: Increase public and professional awareness of epilepsy as a universal and treatable brain disorder; Raise epilepsy to a new plane of acceptability in the public domain; Promote public and professional education about epilepsy; Identify the needs of people with epilepsy at the national and regional levels, and Encourage governments and departments of health to address the needs of people with epilepsy including awareness, education, diagnosis, treatment, care, services and prevention. *No Solicitation, Selling or Asking for Funds of any kind. Violators will be warned and in some cases banned the first time your post is seen. *No digital graphical images. (that would impair or be harmful to someone with photosensitive epilepsy). They will be deleted and member will be warned if continuously posting such images. Repeated violators will be removed and banned. *No harassing, bullying, putting down, foul language is to be used. Immediate removal and banned will occur. *No medical advice to be given; only advice to be given from your own personal experience or supplied from factual websites. This group is not responsible for any medical advice given by anyone in this group. *No adding another member yourself without admin approval. Message one of the admin first for approval."
Online Facebook organisation: Public support, awareness, discussion and debate.
Epilepsy Awareness Group
Page Quote: "Medical Cannabis Research Australia was established in December 2016 by Paul and Sharlene Mavor and Tony Hume. Paul Mavor is a pharmacist and has practiced for over 26 years in WA and owned a number of pharmacies. He has an interest in the pharmacokinetics of different cannabis dosage forms. Sharlene Mavor is a medical scientist with majors in Microbiology, Virology and Biotechnology. She has worked in a number of laboratories both in Western Australia and in the UK. Sharlene has a particular interest in different cannabis strains, potency and purity testing and extraction methods.
Tony Hume is an experienced fund raiser and has a diverse background in education, health and philanthropy. He is a graduate of the Australian Institute of Company Director’s course and is accredited as a Certified Fundraising Executive (CFRE) world-wide. Tony also is an Independent Director for the Yinhawangka people in the Eastern Pilbara region. He is passionate about positive community impact and making connections in the community to maximise peoples’ opportunities.
Medical Cannabis Research Australia is committed to improve the lives of Australian persons and families by reducing the suffering, prevalence and impact of a variety of diseases through the use of medical cannabis. This will be achieved with a focus on clinical trials and ethical supply of medical cannabis. Research will be conducted to support and promote public awareness for the use of medical cannabis including education for clinical practitioners with new treatment options, both locally and globally for their patients. We aim to educate and advise health professionals, patients, their families and carers in the use of medical cannabis through media, education and fund raising campaigns and further cooperate with government and like-minded organisations in order to advance the research, treatments, equity and quality of life which can be assisted with the use of medical cannabis.
"We get many enquiries at ECA related to new treatments in the CBD based pharmaceutical field, and MCRA has some of the most up to date information and is a world leader in this field - one of the top places to seek information on this topic."
Research organisation - Epilepsy, Seizure, Neurological and CBD treatment based medical research body
Medical Cannabis Research Australia (MCRA)
Page Quote "Epilepsy Connections was formed in April 2000 to provide information and support to people with epilepsy. It is a company limited by guarantee and registered in Scotland. It is also recognised as a Scottish Charity.
The charity’s principal objectives were, and continue to be:
Developing and delivering a range of community-based information and support services to people with epilepsy, their families, friends and carers and the professionals who work with them.
Raising awareness of the diversity and complexity of epilepsy needs and working with statutory, voluntary and independent agencies to address those needs.
Involving epilepsy service users in the processes of planning and delivering services and in the monitoring and evaluation of those services."
UK Charity & Support organisation (NOT associated with ECA - similar name by coincidence only)
Epilepsy Connections UK
Page quote: "We are a healthcare software solutions and neuro-spectrum differentiation company that strives to increase diagnostic accuracy in epilepsy, standardize care and screening practices, and improve the quality of life for epilepsy patients. EpiFinder provides a screening and diagnostic tool to assist in distinguishing between the 62 specific types of epilepsy. For those patients who have received a diagnosis and treatment program, we provide a behavioural self-management tool to improve patient compliance in treatment through the use of interactive features and ease of use.
Epilepsy is a neurological disorder where individuals suffer from uncontrollable seizure episodes. Over 65 million people live with the condition, and there are 62 different epilepsy syndromes. Gathering timely and accurate information is imperative to correctly diagnosing epilepsy. Effective management and treatment can help patients to take control of their lives.Diagnosing epilepsy is a long journey with many wrong turns and misdirections. Patients can undergo multiple tests spanning over many months and still have unanswered questions. This results in patients waiting for 18 months to see a specialist and enduring a treatment gap of 5 or more years."
Downloadable online app - used to monitor a persons Epilepsy symptoms and help manage condition
MJN Neurosciences is a South American science, research and engineering company developing high-technology innovative devices to predict epileptic seizures. They develop a complete seizure detection and warning system for people with epilepsy. The result is a non-intrusive device to predict and warn epilepsy seizures. 30% of people suffering epilepsy are considered pharamacoresistant (medicines can not control all seizures). Seizures come by surprise so there’s high risk of accidents. Seizure prediction technology exists but with big and unwearable technologies.
(Page Quote) "We are developing a non-intrusive wearable device that let people with epilepsy do any casual activity knowing that the device will warn when a seizure is to come so they can take all the safety measures to avoid any accident. It used EEG (electroencephalogram) monitoring and AI (artificial intelligence) software. By registering brain activity with EEG we can predict when seizures are to come with an AI software." (End Quote).
Spain: Neurological research & technological development - Epilepsy focused, Public Support services