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Lazarus

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Location: Bethany
Gender: Male


Posted: Oct 11, 2013 - 1:34pm


PAME
Partners Against Mortality in Epilepsy

Use coupon code 03PAME in the coupon code box at checkout If you would prefer to attend this webinar without donating.


Talking About Sudden Unexpected Death in Epilepsy (SUDEP)

Wednesday, October 23, 2013
Eastern: 3:00 PM
Central: 2:00 PM
Mountain: 1:00 PM
Pacific: 12:00 PM

 

Elizabeth Donner, MD, FRCPC,
Faculty of Medicine, 
University of Toronto
Pediatric Neurologist, 
The Hospital for Sick Children
Co-Founder, SUDEP Aware
Click here for bio 
 
Nancy Collins, MD
Associate Professor of Neurology, 
Chicago Medical School
Clinical Ethicist
Click here for bio



R_P

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Posted: Nov 17, 2012 - 12:03pm

David Axelrod putting money where his 'stache is
Obama strategist vows to shave iconic mustache if he can raise $1M for epilepsy research
(former member)

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Location: hotel in Las Vegas
Gender: Male


Posted: Jun 17, 2012 - 8:46pm



Adverse Effects Related to Medications Roundtable






(former member)

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Location: hotel in Las Vegas
Gender: Male


Posted: Mar 15, 2012 - 5:46pm



NATIONAL WALK FOR EPILEPSY

Saturday, March 31, 2012
Washington, D.C.
9:00 AM


Hurry — Reserve your rooms today

Cutoff for hotel block is Thursday, March 15, 2012.
 


(former member)

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Location: hotel in Las Vegas
Gender: Male


Posted: Feb 29, 2012 - 8:16pm





UF researchers make seizure discovery

Suncoast News staff report
February 22, 2012

The research was based on the finding that people with epilepsy have lower levels of the naturally occurring brain hormone somatostatin, and that somatostatin levels drop when people with epilepsy have seizures.

The researchers attached the gene that produces somatostatin to a harmless virus and then injected the combination into lab rats. Scientists often use viruses as gene carriers because of their ability to infiltrate cells and hijack their protein-producing systems.

The rats experienced a "dramatic" increase in somatostatin levels after the injections, according to Rabia Zafar, the lead author of the Neuroscience Letters paper and a former postdoctoral associate in Carney's lab.

But the researchers caution that this study is just a first step. Additional research is needed before the technique can be attempted in humans.

The UF investigators are particularly focused on ensuring the treatment does not cause inflammation and discovering the best way to administer it, either be injection to the brain or a less invasive intravenous infusion.

"What effect a compound is going to have partly depends on where in the seizure circuit that new compound or gene is being placed. You could put the same chemical in two places and get two different results," said Dr. Edward Bertram III, a professor of neurology at the University of Virginia, who was not involved in the UF study.

 




(former member)

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Location: hotel in Las Vegas
Gender: Male


Posted: Dec 9, 2011 - 6:00pm



EPILEPSY ORGANIZATIONS AWARD GRANTS FOR NOVEL TECHNOLOGIES WITH NEAR-TERM PROMISE FOR EPILEPSY


Washington, D.C., December 7, 2011 — The Epilepsy Therapy Project (ETP) and the Epilepsy Foundation (EF) today announced the latest grant recipients of their New Therapy Grants Program, a unique joint venture of the two non-profit epilepsy organizations to advance clinical development and commercialization of promising epilepsy therapies. The grant awards, totaling more than $1 million in funding, will support the development of four new technologies: the EpiLert V1, to alert caregivers at the onset of an epileptic seizure event; Inferior alveolar nerve stimulation (IANS) as a new surgical implantable treatment option to reduce seizures; Triheptanoin, a synthetic edible oil that has inhibited seizures in preclinical testing; and the development of develop an auto-injectable formulation for emergency administration of diazepam to treat seizures in people with epilepsy. The grant awards were announced by the Epilepsy Therapy Project and the Epilepsy Foundation during the American Epilepsy Society (AES) 65th Annual Meeting in Baltimore, MD...


The Grant Recipients:

EpiLert V1 Seizure Alert Device (BioLert, Ltd., Even Yehuda, Israel)
Novel Trigeminal Nerve Stimulation Device (NuroRestore, Inc., Mansfield, MA)
Triheptanoin as Add-on Therapy (The University of Queensland, Australia)
XeriJect Diazepam for Emergency Treatment of Seizures (Xeris Pharmaceuticals, Inc., Austin, TX)


(former member)

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Location: hotel in Las Vegas
Gender: Male


Posted: Nov 8, 2011 - 10:06pm


We are very excited to invite you to kick off the holiday season with us and celebrate the launch of ETP's "Acceleration: LIVE!" with the B-52s, on Thursday evening, December 1, at the House of Blues in Boston. The B-52's never disappoint and for this very special evening they promise to deliver once again. This great night of rock 'n roll will keep you on your feet!

triskele

triskele Avatar

Location: The Dragons' Roost


Posted: Nov 1, 2011 - 6:37pm

 romeotuma wrote:


She needs to stay on her meds no matter what...  she also must get a good night of sleep...  sleep deprivation is the number one trigger...  talk to you relatives and tell them that your niece must stay on her meds...  you talk to me anytime about this...

and post a poem next time you feel like it...  I have kept my eye out for poems by you...  I always enjoy them...


 

 
thanks, i appreciate that....  she does stay on her meds pretty well, especially after the last episode that scared the hell out of all of us.  she had gotten into her car to come home from work.  thankfully, she had not yet started the car.... and had a seizure.  one of her co workers found her and helped her.  she has not gone without her meds since, but i know she struggles sometimes to afford them.

she is very good about getting lots of sleep.  always has been.

and thanks for the compliment.  this has not been a year for writing...but maybe eventually.....

(former member)

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Location: hotel in Las Vegas
Gender: Male


Posted: Nov 1, 2011 - 6:34pm

 triskele wrote:

no, i lost track a few years ago....but i know that if she misses, she can have a full blown seizure.
 

She needs to stay on her meds no matter what...  she also must get a good night of sleep...  sleep deprivation is the number one trigger...  talk to you relatives and tell them that your niece must stay on her meds...  you talk to me anytime about this...

and post a poem next time you feel like it...  I have kept my eye out for poems by you...  I always enjoy them...


 
triskele

triskele Avatar

Location: The Dragons' Roost


Posted: Nov 1, 2011 - 6:26pm

 romeotuma wrote:

Do you know what anticonvulsants she is taking?
 

 
no, i lost track a few years ago....but i know that if she misses, she can have a full blown seizure.

(former member)

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Location: hotel in Las Vegas
Gender: Male


Posted: Nov 1, 2011 - 6:18pm

 triskele wrote:

thanks. she does okay as long as she takes her meds.....but that's the key....and sometimes, she runs out, or can't afford them.....
 
Do you know what anticonvulsants she is taking?
 
triskele

triskele Avatar

Location: The Dragons' Roost


Posted: Nov 1, 2011 - 6:04pm

 romeotuma wrote:


You are welcome...  my heart goes out to your niece...  I hope all goes well for her, and for you...


 

 
thanks. she does okay as long as she takes her meds.....but that's the key....and sometimes, she runs out, or can't afford them.....

(former member)

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Location: hotel in Las Vegas
Gender: Male


Posted: Nov 1, 2011 - 6:00pm

 triskele wrote:

thank you for this.  i am a former epilepsy patient (had only petit mal as a child, cured by time and medication), but my niece is looking like she is not going to overcome it the way that i did...she has grand mal, and will have it her whole life....so..  thank you.
 

You are welcome...  my heart goes out to your niece...  I hope all goes well for her, and for you...


 
triskele

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Location: The Dragons' Roost


Posted: Nov 1, 2011 - 5:06pm

 romeotuma wrote:



National Epilepsy Awareness Month


November is National Epilepsy Awareness Month and the Epilepsy Foundation is asking everyone to Get Seizure Smart.

By taking and distributing the Get Seizure Smart quiz, you are helping us reach our goal of getting 5 million Americans seizure smart in 2011.




 
thank you for this.  i am a former epilepsy patient (had only petit mal as a child, cured by time and medication), but my niece is looking like she is not going to overcome it the way that i did...she has grand mal, and will have it her whole life....so..  thank you.

(former member)

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Location: hotel in Las Vegas
Gender: Male


Posted: Nov 1, 2011 - 4:36pm




National Epilepsy Awareness Month


November is National Epilepsy Awareness Month and the Epilepsy Foundation is asking everyone to Get Seizure Smart.

By taking and distributing the Get Seizure Smart quiz, you are helping us reach our goal of getting 5 million Americans seizure smart in 2011.





Coaxial

Coaxial Avatar

Location: Comfortably numb in So Texas
Gender: Male


Posted: Nov 1, 2011 - 3:21pm

 romeotuma wrote:

Had what?

EDIT:  With no response, I can only assume your question was intended to be coarse and vulgar...  I can't wait until you get DDed!
 


 
Easy there...I walked away from my computer for a while...You have continually posted about this disease and I just figured that you had it...Nothing subversive intended.

Return to ignore mode.


(former member)

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Location: hotel in Las Vegas
Gender: Male


Posted: Nov 1, 2011 - 2:20pm

 Coaxial wrote:
 
How long have you had it?
 


Had what?

EDIT:  With no response, I can only assume your question was intended to be coarse and vulgar...  I can't wait until you get DDed!
 



Coaxial

Coaxial Avatar

Location: Comfortably numb in So Texas
Gender: Male


Posted: Nov 1, 2011 - 2:17pm

 romeotuma wrote:

How long have you had it?

(former member)

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Location: hotel in Las Vegas
Gender: Male


Posted: Aug 23, 2011 - 3:00pm



rTMS for Treatment of Temporal Lobe Epilepsy

Repetitive transcranial magnetic stimulation is a safe and painless method for focal brain stimulation, where small electrical currents inside the brain are induced by a powerful fluctuating magnetic field from outside the brain. Previous testing of low frequency rTMS did reduce brain excitability and suppressed seizures in some patients, but not in patients with TLE. However, the H-Coil's stronger effect penetrates into deeper brain regions.

Dr. Rotenberg and his research team hypothesize that rTMS with the H-Coil, designed to generate sufficient magnetic field strength, can safely and effectively stimulate deeper brain structures and may inhibit the electrical and neurotransmitter activity that underlies seizures in TLE. Their hypothesis is based in part on the encouraging antiepileptic effect of conventional rTMS in other types of epilepsy, and on their animal studies which showed that deeper brain stimulation by rTMS can suppress seizures in rats. The New Therapy Grant will support a clinical study of the H-Coil in children and adults with intractable TLE.


 

 




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Location: hotel in Las Vegas
Gender: Male


Posted: Aug 3, 2011 - 6:34pm



New, less-invasive Epilepsy treatment promising
 
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