Epilepsy Talk
Do You Know Where Your Charity Dollars Go?
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These days, because of Federal budget cuts, virtually EVERY non-profit is desperately in need of funds.
But before you make your donations, you have to ask: Not how much money you’re giving, but WHERE it’s actually going. How do you know where your charitable dollars are being spent?
Epilepsy Foundation Applauds EEOC for New Rules Under the ADA
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When I went to the Philadelphia “Town Hall” meeting for the EEOC, it was very impressive. The room was packed. There was a huge presentation board and someone speaking sign language for the non-hearing. There were peole of all kinds of disabilities on the ADMINISTRATION BOARD — non-seeing, wheelchair bound and others.
In other words, the EEOC doesn’t just walk the walk. They talk the talk!
Just to prove it, the EFA announced newly issued regulations from the Equal Employment Opportunity Commission for implementing Title I of the Americans with Disabilities Act Amendments Act (ADAAA). Title I protects people with disabilities, like epilepsy, from discrimination in the workplace…
Why 3D TVs are NOT for me…
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Here’s the good news and the bad news…
The GOOD: You can buy a 3D TV without using the 3D function.
The BAD: I threw up watching Avatar and I’m not even photosensitive!
I guess you get the message.
Watching 3D can cause other problems in addition to causing seizures. They include: altered vision, lightheadedness, dizziness, eye or muscle twitching, confusion, nausea, loss of awareness, convulsions, cramps and disorientation. (So I’m not such a wuss.)
Epilepsy Awareness Brainstorm!
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This is about awareness, not fundraising. Although if funds came out of it, that’s ok!
Last night, I kicked around the idea of starting a grass-roots epilepsy advocacy group. (The working name is Epilepsy Awareness Alliance, although it doesn’t matter.)
Nothing to do with the government, but probably with some ties or support info from the EFA.
We could have informal talks, appealing to religious organizations, local schools and colleges, neighbors, friends. Even Facebook pages — for those who have them…
Tags: colleges, epilepsy awareness, friends, neighbors, religious organizations, schools, talk to
Tell Your Senators: STOP Cuts in Epilepsy Research and Disability Programs…Take Action NOW!!!
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Tell Your Senators: STOP Cuts in Epilepsy Research and Disability Programs!!! Take Action NOW!
The House of Representatives recently passed HR 1, a bill that would provide funding for millions of government programs for the remainder of the current fiscal year. The bill contains cuts to programs that are important to people with epilepsy including: $1 billion in research funding at the National Institutes of Health, of which $5 million will likely come from epilepsy.
The Senate is likely to vote on this same measure in the next week.
Please ask your Senator to vote against HR 1 when it comes to the Senate. Please also spread the word by telling a friend about these cuts, NOW.
MEG — Could It CURE Your epilepsy?
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Regardless of your age or epilepsy syndrome, all patients of all ages deserve the possibility of living seizure-free. And for those with intractable seizures, surgery is often the answer. But it’s a scary and risky proposition.
But, now there’s new hope when all else fails. A powerful new brain scanning tool which could make all the difference between successful and unsuccessful surgery. Even for those whose surgery has failed before.
Called the MEG (Magnetoencephalography), this powerful scanner acts as a real-time brain mapping and imaging device to determine where the epicenters of seizures are in the brain. It can detect changes in brain waves that occur on the order of milliseconds, as opposed to a second or more with magnetic resonance imaging (MRI). And for a select few patients, those extra milliseconds can mean the difference between life and death.
Tags: brain scanner, CURE, death, Epilepsy, insurance approved, life, MEG, non-invasive, precise, surgery
Clinical Trials. YES or NO?
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If I was asked to take part in a clinical trial, I’m not sure what I’d say…
First there is the fear factor. Would I be a guinea pig for something dangerous? Would they take away my medicines? Would it hurt me? Would it change something in me?
I asked those very questions to Patient Advocate David Albaugh at Team Epilepsy. http://www.teamepilepsy.org/
Here’s what he had to say…
Tags: clinical trial, Epilepsy, hope, medications, progress
Your Child Has Just Been Diagnosed With Epilepsy…
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The diagnosis comes in. It’s epilepsy.
Your heart drops to the bottom of your stomach. You may panic…or cry…or call in the troops for support.
Whether your child is an infant, toddler, grade schooler, adolescent or young adult, how you behave now will make a world of difference to their future.
Here are some resources to help you help your child…
Two Tests Could Aid in Risk Assessment and Early Diagnosis of Alzheimer’s
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From “The New York Times”, published January 18, 2011…
“Researchers are reporting major advances toward resolving two underlying problems involving Alzheimer’s disease: How do you know if someone who is demented has it? And how can you screen the general population to see who is at risk?…”
Tags: alzheimer's, diagnosis, mental decline, predict, risks, tests
The Sacred Disease. A Movie You Can Not Afford to Miss…
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The Sacred Disease is a movie you can not afford to miss…
Motivated by lack of funding and awareness for epilepsy, this film covers the full spectrum of what it’s like to live with this neurological condition by following the lives of three individuals. The Sacred Disease displays an intimate portrayal of the complexities and daily difficulties faced by people with epilepsy.
Tags: complexities, difficulties, Epilepsy, hope, movie, Research, sacred disease
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