Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
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Please Read...i Would Like Your Input Posted: 06-03-04 17:59pm
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
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Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
Responding to Your Questions Posted: 06-03-04 19:04pm
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
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MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
Thanked:0
Posted: 06-04-04 05:31am
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
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RyGuy
New User, Becoming EHEALTHy
Joined: 06 May 2004 Posts: 19 Location: MD
Posted: 06-04-04 07:14am
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
-
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MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
Thanked:0
Posted: 06-04-04 15:36pm
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
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MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
Thanked:0
Posted: 06-14-04 20:54pm
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
