50 Scholarships Awarded for Kids Speak Up! 2008
Kids Speak Up! is a national conference for youth leaders with epilepsy. It provides 7-16 year olds with a unique opportunity to educate elected officials and staff about the disease. It’s also the first chance for many participants to speak out and meet other youth with epilepsy.
Chris Ames, a 10-year-old participant, was typical of many at last year’s event. He strode confidently to the stage on the first night of the conference and said, “I’m not ashamed to have epilepsy. I don’t care what people say; I just keep going. I’m a one-man army!”
Fifty families will receive scholarships to attend Kids Speak Up! 2008. Scholarships provide funding for one parent and one child’s travel, lodging and other expenses. They are sponsored through an educational grant from Abbott Laboratories.
Kids Speak Up! will be held March 30 - April 1, 2008 in Washington, DC.
Please contact Joseph LaMountain at jlamountain@efa.org if you have any questions regarding the event.
Showing posts with label Epilepsy Foundation. Show all posts
Showing posts with label Epilepsy Foundation. Show all posts
Thursday, March 27, 2008
Kids Speak Up! on Epilepsy
From the Epilepsy Foundation:
Sunday, January 13, 2008
Long time no post...
It was quite an eventful Christmas for my family and I. We traveled to Finland to visit our friends over the Christmas and New Years holiday. It was a spendid trip and we were able to tour around the beautiful country for nearly 2 weeks.
One of our worries going into the trip was that the stress from jet-lag might trigger seizures. So before leaving, we asked Dr. Dean (Epilepsy Foundation of NC) her recomendation on the best way to deal with the change in schedule. She told me to keep the same medication schedule regardless of the local time. Being that Finland is 7 hours ahead of the US East Coast, it was a bit difficult, but not impossible. Thankfully it worked and I did not have a single seizure on the trip!
One of our worries going into the trip was that the stress from jet-lag might trigger seizures. So before leaving, we asked Dr. Dean (Epilepsy Foundation of NC) her recomendation on the best way to deal with the change in schedule. She told me to keep the same medication schedule regardless of the local time. Being that Finland is 7 hours ahead of the US East Coast, it was a bit difficult, but not impossible. Thankfully it worked and I did not have a single seizure on the trip!
Wednesday, August 01, 2007
ADA Restoration Act of 2007
On July 26, the anniversary of the passage of the Americans with Disabilities Act, House Majority Leader Steny Hoyer (D-MD) and Representative James Sensenbrenner (R-WI) introduced the ADA Restoration Act of 2007, H.R. 3195.
Recent court decisions (Sutton v. United Airlines - 1998) have dramatically limited the scope of the Americans with Disabilities Act (1990) such that most people with epilepsy are deemed not to have a disability and therefore cannot seek legal recourse if they are discriminated against because of their epilepsy.
Why are they deemed not to have a disability? Because the Supreme Court decision in Sutton v. United Airlines required that the effect of mitigating measures (such as taking medication) be considered in determining if someone has a disability under the ADA... Of the more than a million people living with epilepsy, about 60 percent have their seizures controlled by medications. That is great, but anti-epileptic drugs (AEDs) by their very nature are designed to reduce brain activity and the potential side effects of these medications can go on for pages. Many times, the negative side effects of AEDs can exceed the advantage of having seizure control. But let's assume that one has a seizure at work, goes to the Dr. gets on meds that control the seizures completely with few side effects. Well, the person is still likely to be discriminated against because his boss is scared he will have another one.
Take John Roberts for example, you can bet that when court gets back in session, even if he is not diagnosed with epilepsy, those other 8 Judges are going to be quite apprehensive that their Chief Justice might just have another seizure. A perfect example of the discrimination he already faces are all the questions posed by the media concerning his ability to perform his job. If he did not already have the top spot on the bench, chances are that if he was diagnosed with epilepsy, he would be less likely to get promoted.
Until 1999 there was little fanfare about whether a person with epilepsy is covered by the ADA, or its model counterpart, the Rehabilitation Act of 1973. Most cases presumed that epilepsy was a covered disability.
Since then, courts have recognized that epilepsy is a disability in only a few cases. As a result, people with epilepsy are questioning whether they are even entitled to the protections of the law. Even more troubling is that employers, public accommodations, schools and state agencies have also begun to ask the same question.
Many people who are trying to work despite having an impairment are not being given a fair chance. The ADA Restoration Act of 2007 would correct this injustice. This legislation restores the basic right of people who have a disability to be judged based on performance – just like women, minorities, and the rest of the American workforce.
The Epilepsy Foundation of America makes it easy to take action by sending your Representative the ADA action alert.
Recent court decisions (Sutton v. United Airlines - 1998) have dramatically limited the scope of the Americans with Disabilities Act (1990) such that most people with epilepsy are deemed not to have a disability and therefore cannot seek legal recourse if they are discriminated against because of their epilepsy.
Why are they deemed not to have a disability? Because the Supreme Court decision in Sutton v. United Airlines required that the effect of mitigating measures (such as taking medication) be considered in determining if someone has a disability under the ADA... Of the more than a million people living with epilepsy, about 60 percent have their seizures controlled by medications. That is great, but anti-epileptic drugs (AEDs) by their very nature are designed to reduce brain activity and the potential side effects of these medications can go on for pages. Many times, the negative side effects of AEDs can exceed the advantage of having seizure control. But let's assume that one has a seizure at work, goes to the Dr. gets on meds that control the seizures completely with few side effects. Well, the person is still likely to be discriminated against because his boss is scared he will have another one.
Take John Roberts for example, you can bet that when court gets back in session, even if he is not diagnosed with epilepsy, those other 8 Judges are going to be quite apprehensive that their Chief Justice might just have another seizure. A perfect example of the discrimination he already faces are all the questions posed by the media concerning his ability to perform his job. If he did not already have the top spot on the bench, chances are that if he was diagnosed with epilepsy, he would be less likely to get promoted.
Until 1999 there was little fanfare about whether a person with epilepsy is covered by the ADA, or its model counterpart, the Rehabilitation Act of 1973. Most cases presumed that epilepsy was a covered disability.
Since then, courts have recognized that epilepsy is a disability in only a few cases. As a result, people with epilepsy are questioning whether they are even entitled to the protections of the law. Even more troubling is that employers, public accommodations, schools and state agencies have also begun to ask the same question.
Many people who are trying to work despite having an impairment are not being given a fair chance. The ADA Restoration Act of 2007 would correct this injustice. This legislation restores the basic right of people who have a disability to be judged based on performance – just like women, minorities, and the rest of the American workforce.
The Epilepsy Foundation of America makes it easy to take action by sending your Representative the ADA action alert.
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