Link Catagories:
Informational
Epilepsy Centers
Support Groups
Treatments
Education/ Public Awareness
Fundraising/ Research
Professional
Inspirational
IEP and School issues
Suggest a link
 
 
 
 
Informational: General, Cause Specific, Blogs, Podcasts, and History
  General-  
       
    The Epilepsy Foundation will ensure that people with seizures are able to participate in all life experiences; and will prevent, control and cure epilepsy through services, education, advocacy and research.  
       
     
    The AAN's patients and caregivers website is a comprehensive resource for you and your loved ones on specific neurologic disorders. This site combines important information from such credible sources as the American Academy of Neurology and the National Institute of Neurological Disorders and Stroke websites into one user-friendly site designed specifically for you and your family to become better informed about neurologic disorders.  
       
     
    A collaboration between the MassGeneral Hospital for Children's Pediatric Epilepsy Program and WGBH Educational Foundation. Our goal is to provide clear information about epilepsy in childhood, its diagnosis, and its treatment, and to educate site visitors about the disorder's effects on learning, behavior, and family life.  
       
     
    The Epilepsy Therapy Project exists to overcome the barriers to successful translation of promising new research insights and to make new therapies a reality for patients. We provide financial support and and scientific and business direction to promising new therapies, and we invest in programs and platforms that can take time and costs out of new therapy development. Our key ongoing programs include support of the leading community websites epilepsy.com and epilepsy.com/Professionals, of the Epilepsy Study Consortium (www.epilepsyconsortium.org) and of meetings including the two major international conferences on epilepsy therapy development.  
     
     
    General information on epilepsy. Very well organized and easily navigated.  
       
  Cause Specific-  
 
  Dravet Syndrome
   
    Promoting awareness and research about Dravet Syndrome and related genetic, febrile sodium channel epilepsies and to provide resources and support to improve the quality of life for affected individuals and families.
 
       
 
  Tuberous Sclerosis
   
    The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis while improving the lives of those affected.
         
   
    The Living with TSC Web site is a collaboration between the Herscot Center and WGBH Educational Foundation. Our goal is to provide clear information about the range of medical consequences of tuberous sclerosis complex throughout one's lifetime.
 
       
 
  Lennox-Gastaut Syndrome
   
    The LGS Foundation is a nonprofit organization dedicated to providing information about Lennox-Gastaut syndrome while raising funds to help pursue additional research, services and support for LGS families.
         
   
    Living with LGS provides information and resources for families caring for a child or adult with Lennox-Gastaut syndrome ( LGS ). The site covers topics that include treatment options, various seizure types, and tips for addressing behavioral, educational and family issues. LivingwithLGS.com also features an educational video series Navigating the Storm and a documentary Minute by Minute that spotlights families living with LGS.
 
       
 
  Hypothalamic Hamartomas
   
    Hope for Hypothalamic Hamartomas (Hope for HH ) is a volunteer-based nonprofit organization founded by parents of children with hypothalamic hamartomas (HH). Their goal is to create a single, credible source for information about the diagnosis, treatment, and support of individuals with HH.
 
       
 
  Tramatic Brain Injury or TBI
   
    Serving Acquired (Includes Traumatic) Brain Injured Individuals and Their Families.
     
   
    The mission of NINDS is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world. Link points to: NINDS Traumatic Brain Injury Information Page.
     
   
    The American Academy of Neurology is a medical specialty society established to advance the art and science of neurology, and thereby promote the best possible care for patients with neurological disorders. Links of interest: AAN Member Testifies on Veterans' Tramatic Brain Injury/Epilepsy Issues Before Congress and US Senate Introduces AAN-initiated Epilepsy Center Legislation.
     
   
    A very comprehensive list of TBI related websites put together by MedicalAssistantDegree.com. The list includes information on Cauases, Effects, Treatment and Organizations.
 
       
 
Psychogenic Non-Epileptic Seizures
   
   
    An article addressing PNES and their specefic relations to chronic pain.
   
    Information on the symtoms and treatments for joint pain and Fibromyalgia.
   
    Dedicated to education, treatment and finding a cure for Fibromyalgia.
 
       
     
       
 
Epilepsy related Podcasts
   
    Empowerment podcast series includes leading advocates discussing and developing recommendations for eliminating epilepsy associated stigma, improving the standard of care in the epilepsy community and engaging in effective communication with healthcare professionals. This series is brought to you by the Epilepsy Foundation with financial support from Ortho-McNeil Neurologics®, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc.
   
    Mulltiple podcasts at EpilepsyMoms.com. Podcasts include discussions on the Ketogenic diet, school relations, and neurotherapy.
 
       
 
Epilepsy related Blogs
   
    Author: Alysse Mengason
Alysse has lived with Epilepsy for nearly 7 years. A former broadcast journalist for 10 years, she left on-air work in 2000 to pursue corporate communications, media relations and media training only to be stopped short by encephalitis and meningitis in January 2003. After surviving a coma for more than 3 weeks, she woke up to extreme memory loss, failed cognitive skills and Epilepsy. Engaged to her now husband at the time, Alysse had no knowledge of the fact that she was indeed engaged to be married, let alone who she was engaged to. She had no recollection of her change in careers. After more than 9 months of rehabilitation and therapy, Alysse returned to her career in corporate communications and began to live life with Epilepsy. Now, 7 years later, 5 brain surgeries later (including a Vagus Nerve Stimulator-VNS implant), a wife (yes, she married that guy she forgot!) and mother of a pre-schooler, Alysse lives in suburban Detroit with her family. A staunch supporter of the Epilepsy Foundation of Michigan and the Epilepsy Foundation of America, Alysse has made several media appearances to speak on living with Epilepsy and managing her illness. In early summer 2009, she appeared on an episode of The Doctors syndicated TV show to speak about living with Epilepsy and the VNS implant. She is also the recipient of the 2009 Epilepsy Foundation of Michigan's Flame of Hope Community Service Award. She speaks regularly at conferences and gatherings of those with Epilepsy and their families. Alysse suffers between 5 and 15 seizures each week.
   
    Author: Lisa Boylan
Lisa Boylan is the senior editor of the Foundation's magazine, epilepsyUSA . She has been at the Foundation for over three years and is committed to getting personal stories out about epilepsy as well as covering the most relevant news items in the media and politics for the epilepsy community. She enjoys working directly with people in the epilepsy community because she knows sharing their stories is an integral way of putting a human face on a disorder that is often feared and misunderstood.
   
    Main Author: Andy Morley
UK Epilepsy has been set up by Andy Morley, father of Thomas who suffers from Generalised Partial Epilepsy. The aims of the blog are to help raise the awareness of epilepsy and provide advice, information, stories and to share experiences associated with Epilepsy. UK Epilepsy provides an outlet for people to share their own experiences and has a number of guest bloggers, each telling their own story about epilepsy, sharing their thoughts and insights into how Epilepsy effects their lives and the lives of the people around them. The UK Eplilepsy Blog also helps promote charity events and Epilepsy support groups by writing articles and promoting them across the internet.
   
    Author: Jessica Keenan Smith
This site has become a place to recognize all the stuff that's happening (or not happening) throughout the world to make a difference in the lives of people living with epilepsy. Each post touches on an issue that impacts the more than 3 million Americans and the more than 50 million people worldwide affected by epilepsy.
Jessica Keenan Smith, founder of Living Well With Epilepsy, is an author, blogger, and an expert in niche marketing. Jessica has lived with epilepsy for more than 25 years and Living Well has become resource to the more than 50 million people worldwide affected by epilepsy. Jessica's writing can also be found on Feministing.com, SheWrites.com, Exhalezine.com and GoodDaysBadDays.net. She is an active member of the Society of Children's Book Writers and Illustrators (SCBWI) and her work includes essays, articles, blog posts and picture books. In addition, she speaks on living with epilepsy, making the most of social media, and other topics. You can find her on Twitter, LinkedIn, Facebook and SheWrites.
 
       
  History-  
   
  People have known about epilepsy for thousands of years but have not understood it until recently.  The ancient King Tut's Burial MaskBabylonians wrote about the symptoms and causes of epilepsy 3000 years ago.........  
         
         
   
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