Epilepsy Talk
Adult Epilepsy…Ground-Breaking New Research on Origins
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In a ground-breaking new study which appears online in the Annals of Neurology, neurologist and neuroscientist Dr. Tallie Z. Baram and her colleagues, discovered:
Tags: adult epilepsy, ground-breaking, new research, prevent epilepsy
Protect The Medicaid Program…NOW!
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Both the US Senate and House are back in DC and in session this week. Now is the time to ask them to reject cuts or changes to Medicaid!
Checking charities and their accountability
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Since it is so difficult to figure out where our donations are going and we don’t want to give up on giving, I thought I’d tell you about two very reliable sites that can give you the TRUE facts on your chosen charity. They are: The Charity Navigator and Charity Watch — part of the American Institute of Philanthropy.
Both are well-trusted, responsible guides to help you in your contribution decisions. (Fortunately The Epilepsy Foundation is a 3-star charity, according to the Charity Navigator and it’s also ranked as a top-rated charity by Charity Watch.)
Tags: Charity Navigator, Charity Watch, reliable guides for giving
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
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