Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

So frustrated by both my local and the national strategy by this and other organizations to raise funds.

Thu, 04/18/2019 - 00:47
I live in the Capital of Florida and we have close to nothing. It's a joke. There is an organization called the Epilepsy Association of the Big Bend and while I admire what work they're able to do (primarily for the underprivileged and underserved- no insurance, etc.), their social media photos show them presenting to virtually empty rooms with plates of purple frosted cupcakes. Florida's epilepsy foundation chapter is listed as being located in Maryland. I am honestly enraged by this. I want to do something about it, but don't know how. How is it that a state capital has literally nothing going on regarding the advancement of our dire cause. More people are dying yearly from epilepsy than breast cancer and we get pennies on the dollar comparatively. Having a real late-night stew session here. This is a national problem, but I'm pissed about Florida specifically. What. Gives. Any suggestions about what I can do? I feel mad but helpless because I'm totally clueless about how non-profits operate. From my ignorant point of view of course we aren't getting any funding and no one gives a hoot about epilepsy when this foundation seems to do ZERO grassroots fundraising or spending any money on advertisement and all the other things that have catapulted other disorders and diseases into the spotlight and facilitated the kind of fundraising that brings REAL results to the community instead of BS purple bracelets and cupcakes that people throw away the minute they get home. UGH.

Comments

FLORIDA IS THE THIRD MOST

Submitted by ericajaneli on Thu, 2019-04-18 - 00:49
FLORIDA IS THE THIRD MOST POPULOUS STATE IN THE COUNTRY. 

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.