Epilepsy Foundation of America

[Bernard]

After signing up for their eCommunities (forums), I mostly get emails from them regarding pending legislation and lobbying efforts. I don't hear much about research initiatives or legal/health programs for epilepsy sufferers.

What do you think about this organization? Have they helped you in any way?

[Birdbomb]

I have posted this answer on other sites but will as share it here.

There is no affiliate at all in the state of Nevada. The facilatator of my support group invited the EFA to speek at our meeting in hopes of begining a much needed chapter.

They were very up front. They wouldn't even consider a chapter unless we came up with $300,000 and a sponser willing to contineously shell out the big bucks they wanted. And THEN said that was still no guarentee that they would supply a chapeter.

Real encourgenment and dedication, huh?

Got to love em'.

[brain]

Epilepsy Foundation has been helpful with
me on and off throughout the years both
in Florida and in Georgia - and we DO have
chapters here.

To find your Epilepsy Foundation in your
State if there is one available:

Epilepsy Foundation State Look Up

However, if there are no Epilepsy Foundation
Affiliates or Chapters, there are other Organizations
such as checking through your Hospital or Health
Department.

In my Area we also have SEA (Suncoast Epilepsy
Association) which also has ties / connections
with the Epilepsy Foundation and sometimes
they all get together.

I'm a member of both EF & SEA.

[POSITIVEPERSON]

The NYC chapter use to be run by social workers and raise lots and lots of money. And they were involved . Now the chapter is run by the drs and their social workers and have minimal involvement. They don't do a 1/3 of what they use to do.

In Portland I didn't even bother to check it out I was disappointed in the NYC chapter.
Because they were their for me as a teenager and young adult.

Riva

[speber]

I won't say I care for the lack of initiative in the 'alternative' research areas, but they were VERY helpful to many people we(my wife Renee and I) thought at this past conference. I went into details on this in another thread. You're exactly right that the organization tends to concentrate on the stuff you mentioned. I try to make this a POSITIVE aspect. Consider this, would it be such a bad thing to have different organizations 'specializing' in different fields of research or progress? I mean, here's the Epilepsy Foundation (with a lot of grunt work done already...and a chosen 'track') who can be an effective corporate 'presence' for the epileptic society, with its continued efforts into health services for those without insurance and job assistance....where other groups such as Coping With Epilepsy (so many more...don't kill me over failure to mention here-just demonstrating a point!) could continue to do what they do best...such as raising awareness about neurofeedback and other forms of alternative therapies. Some kind of cooperation between them might lead to better dispersal of funding throughout? Hard to say...but anything that would HELP---I'm on board with.
From what I've seen...there's a 'million' little groups of good intentions out there...and a lot of relatively small research projects going on in many different fields. I just wonder sometimes what would happen if it could all be brought together?
Someone call a rich dude!

[Bernard]

I've posted a list of non-profit groups on the epilepsy resources page. I know that FACES sponsored a study of neurofeedback recently. I believe that CURE is focused mainly on sponsoring research as well. There are a couple listed there that are mainly focused on awareness issues.

[speber]

Your Epilepsy Resources page is a very fine collection of links Bernard. Keep up the good work!

[Zara]

There is one that calls itself Indiana/Kentucky not sure what they are good for way up in Northern Indiana for. There was a chapter up here I had heard it was closing and have heard no different about it so would presume that is the case. A foundation is as good as the people who are a part of it.

[Birdbomb]

Kudos Mr. B!

Imagine!

A man with organizational skills and an eye for fine detail.

[Bernard]

Imagine!

A man with ... an eye for fine detail.

I'd post some pics to impress everyone with my eye for fine detail, but I'm trying to keep this forum family friendly.

[Birdbomb]

EEEK! now I'm scared!