Hi everyone! I am at thePipelineconference in SanFrancisco. Great speakers talking about what's needed to speed up progress for new treatments. The I'll come into chat tonight for ask epi andfill you in
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Take control of your epilepsy and seizures. Seizure management has never been easier.
TAKE CONTROL TODAYTopic: Advocate for Epilepsy
Register to Participate
 epi_help New - Etp pipeline updates
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 columb... New - Help Others with Epilepsy!
Hey everyone,
I am part of a study at Columbia University which hopes to build upon the collected wisdom of people living with epilepsy to inform research about how people take control of their health. Our goal is to provide an opportunity for people...
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 prince... New - What would you do?/Would of done?
So I am going to college. I am doing a practicum/ work expereince in a daycare, I am studying Early Childcare. Yesterday I had some apointments with my specialists out of town one of them is a psychologist who specializes in epilepsy. I she reviewed our...
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 MichaelK New - Panic attack versus seizure
What is the difference between a panic attack and a seizure? The seizure I had this evening started with a sheer panic attack and progressed into a complex partial seizure. I felt sheer terror at first working up my spine and then it generalized into a...
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dr.pops writing a book
I have been an epileptic since the 7th grade, and spent most of my life working in the medical community. Can any one give me an idea how I can go writing a little book to share my experiences?
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 Spike. |
TeamEp... Awareness for Epilepsy Research
For Epilepsy Awareness Month, I thought I would share information about a clinical research study for epilepsy to raise awareness for research. I’m working with a team to spread the word about a study for uncontrolled partial onset seizures. Our website...
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 drowsy... What are you doing for November?
As most of us know, November is Epilepsy Awareness Month! Whoot! I, for one, have several plans to advocate for awareness in my community. Do you?
For starters, every day I'll post a new epilepsy statistic on Facebook. (and they can all be found grouped...
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 jderry preservatives in meats
Has any one heard of the preseratives in meats being a trigger for seziures? Cold cuts are really loaded with the stuff. We had gone to see a Doc. in Hoeophic med and he told us that it takes a day or so for the stuff to get to your...
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joeyssong 2 clicks of your mouse could help raise $1 million for epilepsy r...
Did you know that more people have Epilepsy than MS, Muscular Dystrophy, Cerebral Palsy and Parkinson's Disease combined and more die because of Epilepsy than Breast Cancer ?
Joey's Song is a series of CDs containing rare and unreleased music from nationally...
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Patty123 Reasonable Accommodation for Epilepsy
Hi. It's been a while since I've posted here but I have a question regarding reasonable accommodation for people with epilepsy.
There are two people in my apartment building with extremely loud stereos. One guy even has six speaker surround...
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 webmaster Avra Liverman's Fantastic Fundraising Effort
This has been mentioned before, but it merits repeating that high school student Avra Liverman has set a fantastic example for personal fundraising. She shows how anybody with a little bit of effort can have an incredible impact and do so much to help.
Read...
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bella0809 People with epilepsy can't get married in Turkey
The article on Mothers of Children with epilepsy in Turkey left out a major reason for concern. Turkey still practices eugenics. People with epilepsy are not allowed to get married in Turkey. How is a mother going to react when her child is diagnosed...
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Spike. |
Spike. Should I stay, or should I leave?
Due to me repeatedly being ignored, or receiving
request to "Drop It", when trying to communicate with other members
in the chat room; along with the number of years I’ve been a member of this
community forum (joined in January 2005), I have...
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 allegr... Seizure Dog
Hi! I have been looking into getting a seizure response dog and I am wondering if you have any organizations in Kansas or missouri/surrounding areas to recommend I check into. Thank you for your time!
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Spike. |
Spike. Stick it; or not?
We have a situation about a video on the ABC News website. Sometime, back in the month of November 2010, there was a picture on the MSN.com homepage about a video on abcnews.go.com. After watching the video, which I don't remember what it was about, I typed...
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cheerb... Denied a vacation because of my seizures
Hi, i'm Andrea and i'm new to this site. I have petit mal seizures. i'm 33 years old. Anyways, my friend had invited me on a cruise with her, the first time I was ever invited on vacation with her. I said I could go. Anyways, she talked to this person in charge...
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Medici... Help the Epilepsy Foundation win $500K!
Hi Everyone,
The Epilepsy Foundation of Florida is participating in the Chase Community Giving Program and they have the chance to win $500K to develop programs for kids who have epilepsy. They are the only epilepsy organization competing against...
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scagli... My son hasn't been on one school field trip since his diagnosis...
Hi all, I need some help. My 11 yr old son has epilepsy. He takes Topimax & Diastat (only in Emergency). Anyway, he's a great kid. He tests the same on his achievement tests every year...90% and above and he a an all around smart kid. Problem is this....
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hope2help Inspriational Video
Please take a moment to watch this video as I hope it will inspire you to live fully and richly. Thank you.
http://www.youtube.com/watch?v=Op9xBcnp_18
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NewJersey YouTube Videos of Seizures
Someone may have already raised this topic but, if so, I did not find it.
I was distressed to read an old report in Metro.co.uk about videos of seizures appearing on YouTube. http://www.metro.co.uk/news/148242-youtube-s-freak-show-videos-of-epileptic-fits
The...
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iforgot FDA DR & MEDICATION LIES!!!!!!!!!!!!!!!!!!!!!!!
If your new to Epilepsy be careful about the treatment you get & who your getting it from.
Show this document to your doctors if you can understand it after reading
here's the link
http://www.fda.gov/ohrms/dockets/ac/99/slides/3547s1i.pdf
You can...
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destin... awareness
For Immediate Release
glenn fenster
destinymaker
305-528-7854
destinymaker4u@gmail.com
www.destinymaker.org
6th ANNUAL NORTH AMERICA BIKE RIDE FOR EPILEPSY AWARENESS Miami-New York-Chicago-Denver-Calgary-Fairbanks-Seattle-Venice Beach
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ronda71 daughter
i dont understand why people with seizures are not getting the funding they need from the goverment so i wish they were a way to get a goverment person to help us in a fight for our loved ones we need to find a way to do more than just listen to the dr...
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 3Hours... Your submission has triggered the installed spam filter and will ...
Your submission has triggered the installed spam filter and will not be accepted.
Epilepsy is too big of a problem to discuss?
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 cmaclean Epilepsy Walk
For anyone in the San Diego area, Sharon's Ride Run Walk for Epilepsy is April 17th !!!! Please visit http://sharonsride2011.kintera.org/ for more info. If you need a team to join you can visit my team's page at http://sharonsride2011.kintera.org/thehelpthatshewas....
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Mr. 89 |
4evan Intractable epilepsy - infantile spasms leading to hemispherectomy
Hello. I wanted to take a moment to let others know that my baby son Evan (10 months) was diagnosed at 3 months with infantile spasms. His status became intractable after several medication trials were performed including 3 ratios of the ketogenic diet. Two...
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 phylis... Go to Dr. Oz’s website where it says “Ask Dr. Oz a question” and ...
Dr. Oz is well-known and respected world-wide. He also has an open ear. What we need to do is all participate repeatedly in his “Ask Dr. Oz” http://www.doctoroz.com/ask * You can write about:
* November is Epilepsy Awareness Month.
*...
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 Sparkl... The New York Marathon
So, my best friend is running the New York Marathon for me next month. It's a bit wacky. She's running because she knows how hard my battle has been for me, and how I'm completely out of options treatment wise. She flies in from Oxford, England in a bit over...
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don2010 facts on our ADA and justice alike,whos got more?
COURT HOLDS THAT EPILEPSY IS NOT A DISABILITY UNDER THE ADA AND EMPLOYER IS NOT REQUIRED TO IGNORE SENIORITY SYSTEM TO GIVE PREFERENCE TO DISABLED WORKER
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3Hours... Keppra Has problems too, Whew!
Whew!! My concern over the minority of people who were insulted and/or put down when they got advice
to stop wallowing in self-pity at a time when they needed the most support really rocked the boat!
I know epilepsy is a real challenge; I know...
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Pony P... Seizure Alert Dogs
I came on here not realizing that others are truly fighting for have their independence (like me) and I wanted to share this with those who have problems with taking medications or they don't work. I am on medications, but it doesn't control all of my...
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MichaelK We are the heroes/heroins!
Well, a strange thought entered my mind today that I wanted to share it with all other readers. Despite all of daily struggles with Epilepsy, AEDs, depression, and doctors, we somehow never give up.
Many people who have better physical conditions do not...
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smallsock What to do?
Hi, I am a person who does not have seizures but I wanted to learn more about them. I thought I would learn more from people who actually deal with epilepsy themselves rather than reading books from doctors.
I would like to know what you would want...
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vmontano finding a career to help people with epilepsy
Hi I want to go into a career to help people with epilepsy.Can someone give me some suggestions? What type of careers are most needed to help people with epilepsy? THANKS
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 desert... VNS
HI I am just letting people know tha I am a VNS Ambassador for Cyberonics for the state of AZ.
if you live in the phx metro area please let me know and what is going on and I will get in touch with the fellow that is the VNS consultand...
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phylis... Epilepsy Abuse and Civil Rights
The following letter was written to local Legislators, Health & Human Service Agencies, The Office for Civil Rights and selected members of the President’s Cabinet…
Dear Senior Advisor Axelrod:
Re: Epilepsy Abuse and Civil Rights
I’m...
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 TriadE... Guilford County support group
I am working on starting a support group in the Guilford county area,Anyone interested,if so contact me at TriadEpilepsy@aol.com and let s get this thing going!!!
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phylis... Help Remove Barriers for People with Epilepsy!
This week, the U.S. Government sent an important letter to every state health department. It stressed the importance of eliminating barriers that prevent people with disabilities from becoming fully integrated into their community....
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Anonymous How many of us want or use generic AEDs?some dont think theres a ...
The following is a transcript of a report by medical editor Marilyn Brooks that first aired Sept. 12, 2007, on WTAE Channel 4 Action News at 5 p.m.
--------------------------------------------------------------------------------
There...
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antoin... looking for a neurologist suffering from epilepsy
I have complex partial epilepsy and interictal psychosis. I am a healthcare worker. I see too many people complaining about their neurologists and not understanding their disease. At a 2% incidence in the general population there MUST be a neurologist somewhere...
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Spike. |
phylis... Sharing Awareness
I was on a film set for the past 3 days and got to know the crew pretty well. At the end of the shoot, I gave everyone from the talent to the intern an epilepsy awareness bracelet. The sound mixer cried. The production manager thanked me profusely. The...
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 remedy... Myths About Epilepsy
Many people have written essays about conventions and beliefs in epilepsy that have been passed through generations to generations. These beliefs mostly include superstition and misconceptions that make epilepsy sound worse than it should be.
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Anonymous Bad Medicine----medical neglect is part of the punishment at the ...
Despite big bills for prisoner health care, some claim medical neglect is part of the punishment at the Salt Lake County jail.
A night in the slammer isn’t supposed to be a picnic. But prisoners with serious medical conditions...
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rpadden Grants for epilepsy awareness
I'm a playwright and have written a full length, two-act play about (and in cooperation with) an epileptic woman, who at the age of 47 lost her memory after a major seizure. She wrote a book about it, and appeared on national TV.
I've been searching...
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 mcdonaja Take some responsibility.
This is a repost, however I think it warrants its own thread in response to a number of posts where individuals have decided to do some cop bashing with regards to Police and their response to epilepsy.
Police Officers across North...
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 kathyc My husband's boss is trying to make him quit
After beating prostate cancer and switching meds & all that goes with that, my husband was able to return to his job of over 20 years. Now his boss is making his life at work so stressful that he nearly seized last nite and is jerky...
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Anonymous familliar?When help harms with their epileptic son in a seizure, ...
When help harms with their epileptic son in a seizure, Peter and Gisela Stetter called 911.
Instead of help, the call brought disaster
by Lorilyn Rackl Daily Herald Health Writer
Posted on Monday, October 09, 2000
Every Saturday...
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 smokingtp Patients of Dr. Harold J. Hoffman & CIA MK-ULTRA
As a unwitting victim of Dr. Harold Hoffman's top secret
psychosurgical experimentation (1969-1972) at the Toronto Hospital for Sick Children, I feel compelled to educate others of this doctor's breach of the criminal code upon...
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 txrhb1 Advocacy in school for our children
Each child who receives special education services is entitled to an Individualized Education Program, devised by parents, teachers, educational administrators, and others. Information from the US Department of Education on the IEP...
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epi_help Public Policy
Hi everyone,
I just returned from the Public Policy Institute and Kid's Speak Up program by the Epilepsy Foundation. I have attended this in past, but usually as a speaker. This time I was a mom, and my son did most of the talking...
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Anonymous new and old meds---new studies--insurance refusal///anyone with t...
its a new year with new insurance.even for disabled folks we pay $5 and $3 for prescription drugs we need to controle our disabilaties.thats not all though.
medication prices goes up up up$$$$ and for those without...
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 steveh FCC Regulations on flashing graphics on television
I've discussed the matter with commissioner Adelstein and he thinks it would be a fine idea. Anyone have any opinions on this matter? I don't think these sorts of things only effect those of us with epilepsy. Those with Chronic...
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 Bedge In the (Australian) News Today ...
In the news this morning, it stated a 56 year old woman was buying Xmas decorations at a shopping center, she had a grand mal in the car park, and some guy stole all her money while she lay there on the ground.
She had only just...
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Lynn M... Work Related
I have several jobs where they have let me go because of seizures ane they will find another excuse to let me go and I know for a fact that it was that reason.
I have gone to the Epilepsyfoundation.com with several links that might...
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 Joyce When is enough enough before your loved one.....
Hello everyone,
Since I was diagnosed with seizures I have been over medicated, ignored, treated with little to no respect, given the wrong medication and accused of faking stroke like symptom's by a paramedic. This has become...
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Anonymous Actor michael j Fox Backs Culver
Chet Culver got some star power for his run at Terrace Hill Monday.
Actor Michael J. Fox campaigned for the democratic candidate for governor and stem cell research in Des Moines.
At least 1,000 people showed up at Drake University...
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 jrk37 Volunteering
First off my name is Joshua Keenan and I'm a freshman at Drexel University. I never understood seizures until I had my first one in front of my entire graduating class in June. Having a Tonic Clonic seizure in front of all of my class...
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 Scrapb... THE WORLD NEEDS TO GET A WAKE-UP CALL
We need to start demanding it become law to have someone present during legal questioning!
I was recently divorced. My ex & I have a 13 year daughter from the marriage. My ex told our daughter he would kill himself if she left...
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 5am All Roker joke, over the line?
I have been a little under the weather lately due to med changes, so i just heard this. I just came across an article about Al Roker of the Today Show (07/07/07). It said he made an epileptic joke regarding a story about the new...
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 pinkinmd National Walk for Epilepsy
Is anyone attending the National Walk for Epilepsy this Saturday on the National Mall in DC?...
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mcdonaja School Advocacy
We have used the local epilepsy society to speak to our son's teachers with regard to epilepsy and its manifestations.
We've identified a need for others in the school (students and teachers) to become more aware of the issues....
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Anonymous Bad Medicine----medical neglect is part of the punishment at the ...
Despite big bills for prisoner health care, some claim medical neglect is part of the punishment at the Salt Lake County jail.
A night in the slammer isn’t supposed to be a picnic. But prisoners with serious medical conditions...
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 cpipitone Summer Stroll for Epilepsy
The Epilepsy Foundation of Eastern Pennsylvania (EFEPA) would like to invite you to participate in its annual Summer Stroll event on Saturday, June 23rd, in Fairmount Park, Chestnut Hill, PA.
Summer Stroll is a 5-mile, non-competitive...
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 George R Ever Volunteer? Why Not?
After having had epilepsy for 1/2 of my life, and participating in awareness campaigns of major hospitals, social service organizations, and even street fairs, I am still shocked by the percentage of we "E people" who chose not to...
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 Jasons... Starting the new year with knowlege
I would like to invite everyone to start the new year off with knowledge and power. There is a new non-profit out there whose mission is to speak up for those who can no longer speak. For those who have died. For those who are not...
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Anonymous Movie Reviews -epilepsy related-
released 4/11
THE AURA
there is something criminal about his dreams
Espinoza is a taxidermist marked with strange qualities-
a photographic memory and random fits of epilepsy.toescape his lonly...
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 lisam1... Former Lynn woman writes book about epilepsy battle
As promised, here is the article from The Daily Item of Lynn. Since it was never published online, there is no way I can post the actual article, so I have to type it out freehand. Here goes.
Former Lynn woman writes book...
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 Holly Ann Manipulation to treat
I have a form of epilepsy called, "status epilepticus".I have learned how serious it really is.So do the doctors in the hospital I go to.After few days in status my mother takes me to the hospital to get I.V. adivan {which is the...
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Anonymous How many of us want or use generic AEDs?some dont think theres a ...
The following is a transcript of a report by medical editor Marilyn Brooks that first aired Sept. 12, 2007, on WTAE Channel 4 Action News at 5 p.m.
--------------------------------------------------------------------------------
There...
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joeyssong 2 clicks of your mouse could help raise $1 million for epilepsy r...
Did you know that more people have Epilepsy than MS, Muscular Dystrophy, Cerebral Palsy and Parkinson's Disease combined and more die because of Epilepsy than Breast Cancer ?
Joey's Song is a series of CDs containing rare and unreleased music from nationally...
|
Anonymous Actor michael j Fox Backs Culver
Chet Culver got some star power for his run at Terrace Hill Monday.
Actor Michael J. Fox campaigned for the democratic candidate for governor and stem cell research in Des Moines.
At least 1,000 people showed up at Drake University...
|
txrhb1 Advocacy in school for our children
Each child who receives special education services is entitled to an Individualized Education Program, devised by parents, teachers, educational administrators, and others. Information from the US Department of Education on the IEP...
|
5am All Roker joke, over the line?
I have been a little under the weather lately due to med changes, so i just heard this. I just came across an article about Al Roker of the Today Show (07/07/07). It said he made an epileptic joke regarding a story about the new...
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 dm_creger Americans with Disabilities Act 2008
Here's the deal, fellow Americans - you are supposed to be protected
under the Americans with Disabilities Act of 1990... but there's a
problem with this because of judicial rulings over the years against
this Act.
The following links are from The Epilepsy...
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Spike. |
 kdredske |
webmaster Avra Liverman's Fantastic Fundraising Effort
This has been mentioned before, but it merits repeating that high school student Avra Liverman has set a fantastic example for personal fundraising. She shows how anybody with a little bit of effort can have an incredible impact and do so much to help.
Read...
|
destin... awareness
For Immediate Release
glenn fenster
destinymaker
305-528-7854
destinymaker4u@gmail.com
www.destinymaker.org
6th ANNUAL NORTH AMERICA BIKE RIDE FOR EPILEPSY AWARENESS Miami-New York-Chicago-Denver-Calgary-Fairbanks-Seattle-Venice Beach
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TeamEp... Awareness for Epilepsy Research
For Epilepsy Awareness Month, I thought I would share information about a clinical research study for epilepsy to raise awareness for research. I’m working with a team to spread the word about a study for uncontrolled partial onset seizures. Our website...
|
Anonymous Bad Medicine----medical neglect is part of the punishment at the ...
Despite big bills for prisoner health care, some claim medical neglect is part of the punishment at the Salt Lake County jail.
A night in the slammer isn’t supposed to be a picnic. But prisoners with serious medical conditions...
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FreeEp... |
 sophia... BLOODY RED BULL,......ENGLAND and other counties need a WAKE UP C...
well were do i start.... i'm 17 , i have a form of autism called Aspergers Syndrome i'm also have A.D.H.D
(Attendtion Defict Disorder) and the list is never ending ......I'm from the uk and an i just got diagnosed with
epilepsy two months ago...
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 DAWWN Buddy Lists and Support Groups
Hi all,
This forum might not need lots of exchange, who knows. Just wanted a comment to be able to go out to all, without going to every forum and blog to do it. I figure to start it here and let it ride with everyone posting...
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 efnj_a... Calling all New Jersey Residents!
The Epilepsy Foundation of New Jersey is working to help along on some of the many legislative and advocacy issues that we have been involved with. One of the primary projects that the EFNJ is proud to be working on is Epilepsy Patient Protection legislation.
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Spike. CBS 60 Minutes - Sunday, October 25th, 2009
Hello everyone, I found out about something just last night that I'd like to bring to everyone's attention. On Sunday, October 25, 2009 the CBS 60 Minutes is supposedly going to air a segment on CURE and epilepsy. For those of you who don't know about...
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ronda71 daughter
i dont understand why people with seizures are not getting the funding they need from the goverment so i wish they were a way to get a goverment person to help us in a fight for our loved ones we need to find a way to do more than just listen to the dr...
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cheerb... Denied a vacation because of my seizures
Hi, i'm Andrea and i'm new to this site. I have petit mal seizures. i'm 33 years old. Anyways, my friend had invited me on a cruise with her, the first time I was ever invited on vacation with her. I said I could go. Anyways, she talked to this person in charge...
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beanad... DON'T FORGET TO WEAR PURPLE
DON'T FORGET TO WEAR PURPLE ON MARCH 26!!!!
Founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada, Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26, people from...
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beanad... DON'T FORGET TO WEAR PURPLE
DON'T FORGET TO WEAR PURPLE ON MARCH 26!!!!
Founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada, Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26, people from...
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beanad... DON'T FORGET TO WEAR PURPLE
DON'T FORGET TO WEAR PURPLE ON MARCH 26!!!!
Founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada, Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26, people from...
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beanad... DON'T FORGET TO WEAR PURPLE
DON'T FORGET TO WEAR PURPLE ON MARCH 26!!!!
Founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada, Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26, people from...
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phylis... Epilepsy Abuse and Civil Rights
The following letter was written to local Legislators, Health & Human Service Agencies, The Office for Civil Rights and selected members of the President’s Cabinet…
Dear Senior Advisor Axelrod:
Re: Epilepsy Abuse and Civil Rights
I’m...
|
sophia... Epilepsy Action UK 10k Bradford Run.
Hi my name is Sophia Hill, ive been a member on this site for over 2
years, i'm not really one for doing any form of sports but i have
decided to start training of the Epilepsy Action 10k in West Yorkshire,
Bradford UK on the 21st of March 2010. I got diagnosed...
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 milliec7 Epilepsy Foundation
Please help me in having the Epilepsy Foundation create a Ribbon Magnet which funds go to them. Reply to this thread with your name, city and state. Please help me in making this change.
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