Best news on epilepsy from 2011

There were some great stories on epilepsy that we shouldn’t forget before running headlong into 2012. These include a major genetic discovery, the surprise that Emily Dickinson had epilepsy, J&J’s decision to leave smelly meds on the their production line, and evidence that UCB wants to hear from people with epilepsy.

Research Discovery

This year a story ran in the Journal of Human Molecular Genetics (May 2011) that featured research so groundbreaking that the story was almost immediately picked up by Science Daily, The Toronto Sun, The Ottowa Sun, A Health Blog, BioQuick News, PhysOrg and continued spreading across the globe swiftly.

“The results showed for the first time the role of the SYN1 gene in autism, in addition to epilepsy, and strengthen the hypothesis that a deregulation of the function of synapse because of this mutation is the cause of both diseases,” notes Cossette. He adds that “until now, no other genetic study of humans has made this demonstration.” Read more in Research Discovery Story.

Women’s History Month

This year we dedicated a post during Women’s History Month, as a quick nod to Emily Dickinson, and of course all the other women who struggle with epilepsy. Read more in Women’s health and epilepsy.

Smells like teen spirit

When something smells bad in the ‘fridge you might call a spouse over to take a whiff. You might even go so far as to say “c’mere taste this, it smells bad doesn’t it?” But, would you just leave it in the fridge for months to see if someone mentioned it? I don’t think so. As a consumer of Topomax it seems like that’s exactly what Johnson & Johnson did this year. Read more in Topomax recalled: Smells like teen spirit? Not so much.

Epilepsy Blogger Summit

Living Well participated in a blogger summit sponsored by Epilepsy Advocate and UCB. Read more about who participated in the blogger summit at ShortHairDiva.com

Let us know what you think about these stories. For more news and updates follow Living Well on Twitter and Facebook.

Jessica K. Smith Founder and CEO; Executive Director

Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.

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