Heated discussion about epilepsy advocacy on Bryan Farley’s blog

Bryan Farley is a wonderful photographer, fantastic writer and dedicated epilepsy advocate. Oh yeah, and he has epilepsy too. Bryan recently started blogging on the Epilepsy Foundation’s ecommunities blog network site.

Bryan recently posted a fantastic piece on the blog network. After
reading the post and the exciting commentary that follows, I asked if he would give Living Well readers a sneak peak. Below is the first bit of Bryan’s thoughts on epilepsy advocacy. I encourage you to read the entire piece as well as the comments on his site.

Title: If all you have is a CURE, people with epilepsy become…

Author: Bryan Farley

There is a quote by Bernard Baruch that I have been contemplating lately.
“If all you have is a hammer, everything looks like a nail.”

I have been thinking about the quote for several reasons. For one, I often feel as if I do not have enough tools to express myself effectively. Decades of shame have taught me how to be silent and how to be outraged, but not how to express my frustration with caring people. I want to learn how to use a velvet monkey wrench.

The quote also illustrates how some health organizations approach epilepsy advocacy. It seems that some people only have one blunt tool; epilepsy must be CURED. Many of these advocates do not have epilepsy, yet they hammer away for a CURE. Whenever they finish hammering, I am often left feeling a little more bent and rusty than when they started.

If all you have is THE CURE, people with epilepsy become the nail.
Read more

Now it’s your turn to join in the dialogue.

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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