Epilepsy Foundation

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The Epilepsy Foundation, also Epilepsy Foundation of America (EFA), is a non-profit national foundation, headquartered in Landover, Maryland, dedicated to the welfare of people with epilepsy and seizure disorders. The foundation was established in 1968 and now has a network of 59 affiliates. The foundation's programs aim to "ensure that people with seizures are able to participate in all life experiences; and to prevent, control and cure epilepsy through research, education, advocacy and services."

The Epilepsy Foundation came into existence as the result of a merger of the Epilepsy Association of America and the Epilepsy Foundation in 1967. It has since been joined by the National Epilepsy League. In December 2012, it merged with The Epilepsy Therapy Project. The new mission of the Foundation is to "stop seizures and SUDEP, find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies".[1] Programs included educational, counseling, referral, and employment assistance. In addition the EFA has advisory and youth programs, training grants and programs.

2008 forum invasion[edit]

On March 28, 2008, Wired News reported that "Internet griefers"—a slang term for people whose only interests are in harassing others[2]—assaulted an epilepsy support forum run by the Epilepsy Foundation of America.[3] JavaScript code and flashing computer animations were posted to trigger migraine headaches and seizures in photosensitive and pattern-sensitive epileptics.[3] According to Wired News, circumstantial evidence suggested that the attack was perpetrated by Anonymous users, with the initial attack posts on the epilepsy forum blaming eBaum's World. Members of the epilepsy forum claimed they had found a thread in which the attack was being planned at 7chan.org, an imageboard that has been described as a stronghold for Anonymous. The thread, like all old threads eventually do on these types of imageboards, has since cycled to deletion.[3]

RealTechNews[unreliable source?] reported that the forum at the United Kingdom-based National Society for Epilepsy was also subjected to an identical attack. It stated that "apparent members of Anonymous" had denied responsibility for both attacks and posted that it had been the Church of Scientology who carried them out.[4] News.com.au reported that the administrators of 7chan.org had posted an open letter claiming that the attacks had been carried out by the Church of Scientology "to ruin the public opinion of Anonymous, to lessen the effect of the lawful protests against their virulent organization" under the Church's fair game policy.[2] The church has previously been involved in false flag operations to frame and discredit groups or peoples it disagrees with such as Operation Freakout and Gabe Cazares.[improper synthesis?][5][verification needed]

The Tech Herald[unreliable source?] reported that when the attack began, posts referenced multiple groups, including Anonymous. The report attributes the attack to a group named "The Internet Hate Machine" (a reference to the KTTV Fox 11 news report), who claim to be part of Anonymous, but are not the same faction that are involved in the campaign against Scientology.[6] Some Anonymous participants of Project Chanology suggest that the perpetrators are Internet users who merely remained anonymous in the literal sense, and thus had no affiliation with the larger anti-Scientology efforts attributed to Anonymous.[6] During an interview with CNN, Scientologist Tommy Davis accused Anonymous of hacking into the Epilepsy Foundation website to make it display imagery intended to cause epileptic seizures. Interviewer John Roberts contended the FBI said that it "found nothing to connect this group Anonymous (with these actions)," and that it also has "no reason to believe that these charges will be leveled against this group."[7] The response was that the matter was on the hands of local law enforcement and that there were ongoing investigations.[7]

Controversy[edit]

According to the Wall Street Journal, the foundation, with its local affiliates, has been lobbying for state laws in 25 states that would prevent pharmacists from substituting generic epilepsy drugs for brand-name drugs unless the pharmacist had written consent of the physician or patient. The pharmaceutical industry has also been lobbying state legislatures for the change, and working with the foundation.

The pharmaceutical industry spent $8.8 million in state campaign contributions in 2006. In its annual report, the Epilepsy Foundation reported that it got $500,000 to $999,999 from GlaxoSmithKline, and $100,000 to $499,999 from each of Abbott Laboratories and Johnson & Johnson. Representatives of four pharmaceutical companies sit on the Epilepsy Foundation's board, as does Billy Tauzin, head of PhRMA, which gave $25,000 to $49,999. The Foundation denied that pharmaceutical funding had anything to do with its support of the laws.

Generic drug substitution is significant, according to the Journal, because four major branded drugs, with $5 billion revenue last year, will be going off-patent by 2010. (The five best-selling drugs are Topamax, Lamictal, Lyrica, Keppra and Depakote.) Pharmacists can now substitute generics, because every generic drug, in order to be approved, has to demonstrate that it is equivalent to the branded drug.

The Epilepsy Foundation received anecdotal reports of patients experiencing seizures and side effects after switching drugs, and tried to convince the U.S. Food and Drug Administration (FDA) in 1999 that there was a problem, but the FDA decided there was no evidence. In 2006, the Foundation convened a committee of medical experts, and its own experts also found no evidence. Nonetheless, the Foundation recommended that doctors be required to give permission to switch to generics.[8][9]

References[edit]

  1. ^ "Epilepsy Foundation And Epilepsy Therapy Project Finalize Merger To Create Strong, Unified Organization To Support People With Epilepsy". December 26, 2012. Retrieved April 10, 2013. 
  2. ^ a b Andrew Ramadge (April 1, 2008). "Anonymous attack targets epilepsy sufferers". News.com.au. Retrieved April 1, 2008. 
  3. ^ a b c Kevin Poulsen (March 28, 2008). "Hackers Assault Epilepsy Patients via Computer". Wired News. Retrieved April 1, 2008. 
  4. ^ Michael Santo (March 29, 2008). "Hackers Attack Epilepsy Forum; Cause Headaches, Seizures". RealTechNews (Underground Networks). Retrieved April 1, 2008. 
  5. ^ "United States of America v. Jane Kember, Morris Budlong, Sentencing Memorandum – Wikisource". Secure.wikimedia.org. Retrieved March 29, 2011. 
  6. ^ a b Steve Ragan (March 31, 2008). "Targeted physical attack takes aim at Epilepsy". The Tech Herald. Retrieved April 2, 2008. 
  7. ^ a b Scientology vs Anonymous, Critics take it to the web. CNN. Event occurs at 0:50–1:38. Retrieved June 27, 2008. 
  8. ^ Pill push: Industry fights switch to generics for epilepsy, big drug makers help patient groups lobby; more attention to states, Sarah Rubenstein, Wall Street Journal, July 13, 2007. Free full text
  9. ^ Big Pharma States Its Case by Joe Mantone, Wall Street Journal Health Blog, July 13, 2007, 6:53 am

External links[edit]