Epilepsy Forum - Please Read...i Would Like Your Input

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Q: Please Read...i Would Like Your Input

asked by: MickeyFan on June 3rd, 2004

Experienced User

I live in the state of michigan, and I recently was asked to join the community advisory committee of the epilepsy foundation of michigan. (there are other states with one to, and there is the national epilepsy foundation also.)
its a group of about 20 people through out the state (the lower half) that are either the one with seizures or they have a child that has them. The people range from about 17 to 50's (?).
The purpose of the group is to help the epilepys foundation figure where there services are needed most. Like the camp for kids, semiars on the treatments of epilepsy, information, and so on.
It was brought to the groups attention that a survey was done of logos of different companys and groups (ex: cancer society) and very, very, very few people knew what the epilepsy logo was. Or what they (the epilepsy foundation) do for people.
We were the asked to do some home work, and find out from others who have epilepsy......

1. Have you ever heard of the epilepsy foundation???

2. Do you know what the logo looks like????

3. Do you know what services that they offer???

4. Have you or someone you know ever used the epilepsy foundation before???

5. Has your doctor ever told you about the epilespy foundation or for that matter any other source for help and info????

6. Do you know that november is national epilepsy month???? Where did you learn about it???

7. What services do you think our the most important for them to offer???

8. Do you know that they will help people form a support group in their area???

9. Have you ever been to there website???? Www.Epilepsyfoundation.Org
this is the national website (theres tons of info there)
and the phone number is 800-377-6226

your input is very appreciated....
Thanks
jill
p.S. If you have any questions just ask i'll try to answer them as best as I can

Replies(5)

Kathyalison

replied on June 3rd, 2004

Experienced User

Responding to Your Questions

Hi jill,
i'm a canadian so I don't know much about the u.S. Epilepsy foundation. I do know it's there, but I don't know much about it. At the same time, I don't know much at all about the canadian one either. I see pamphlets at drug stores and doctors' offices about epilepsy but I do not think that people in general are as informed about this as they are diabetes or cancer for example. I think epilepsy is something that many people are afraid of and afraid to talk about and I think it's important that the public know more about it. I feel there is a stigma attached to people with epilepsy sometimes too.
This sight is where I have found the most support and really appreciate it being available. I think that anything the federation can do to make people more aware that people with epilepsy are just normal people, would be really helpful. Also, when anyone is diagnosed with epilepsy, especially young children, it can be really upsetting and a very scarey time. Any support that can be offered to these people and families would be greatly appreciated as well i'm sure.
I appreciate your asking for input from others and thank you.
I'm sure you will make many positive contributions to the federation.
Good luck,
kathy

MickeyFan

replied on June 4th, 2004

Experienced User

Thank you kathy,
I couldn't agree with you more. That has been brought up by many people in the group already. And we were told that one of there main goals is to educate everyone so that there is more knowledge of epilepsy.
Thanks again for your input.
Jill

RyGuy

replied on June 4th, 2004

New User

1. Have you ever heard of the epilepsy foundation???
-yes, obviously :d

2. Do you know what the logo looks like????
-i believe it's that red flame looking thing??

3. Do you know what services that they offer???
-i have no clue what services they offer. I've tried to look up different things to no avail!

4. Have you or someone you know ever used the epilepsy foundation before???
-nope

5. Has your doctor ever told you about the epilespy foundation or for that matter any other source for help and info????
-hmmm... Not sure about that one

6. Do you know that november is national epilepsy month???? Where did you learn about it???
-i read that in cosmopolitan (believe it or not!)

7. What services do you think our the most important for them to offer???
-i would guess epilepsy walks, support groups. More info about stuff happening in your area

8. Do you know that they will help people form a support group in their area???
-didn't know that.. Very neat! But how??

9. Have you ever been to there website???? Www.Epilepsyfoundation.Org
this is the national website (theres tons of info there)
and the phone number is 800-377-6226

- Smile

MickeyFan

replied on June 4th, 2004

Experienced User

Ryguy,
thanks for your response. As for how to get help forming a support group all you have to do contact the local foundation if there is one or the national and let them know your interested in forming a group. They will guide you through it and give you info and things to use.
Before I moved last year I belonged to one, there isn't one out here in the country where I live now so another lady and I our trying to get one going.
Good luck. If I can be any help just let me know.
Jill

MickeyFan

replied on June 14th, 2004

Experienced User

Hi everyone,
i really would like more input from people, I would greatly appreciate it.
I just want to help by informing the epilepsy foundation where there help if most needed. By the ones that they are suppose to be helping. So if you could please take a few minutes and answer the few question it would really benifit alot of people.
Thanks,
jill

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