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emmy1
New User, Becoming EHEALTHy
Joined: 04 Feb 2005 Posts: 13
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Spread the Word of Awareness
Posted: 11-19-05 01:08am
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First I want to say ((((hugs)))) to this
family.
Today was there little boys birthday. He
would be 7 if a seizure didnt take his
life.
I am so happy this family is doing so much
to help all of us who have seizures and
they continue to stay strong.
They just opened a new onlie site for all
of us and I wanted to share it with you
http://www.Cafepress.Com/d
annywaderjr
emmy
once again a thread hijacked by kayakmom.
This is one who needs to get a life and
leave others alone for once in her life.
Why is it when someone posts about trying
to help anyone with e this person seems to
feed on what we are going through and jump
in.
A member on efa site spent her time and
money to design and make epilepsy
bracelets and she tried her hardest to
trash this poor family too.
Last edited by emmy1 on 12-03-05 10:18am; edited 1 time in total
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004 Posts: 252 Location: Conn
Thanks: 2
Thanked:0
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Posted: 11-19-05 17:30pm
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How does the money go to raise awareness?
Is there a certain percentage that goes to
a specific group?
Do they have an irs number too?
So sorry for their loss. They have had a
rough few years, I am sure.
25,000-50.000 people loose their lives due
to epilepsy annually.....
Thanks for sharing
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emmy1
New User, Becoming EHEALTHy
Joined: 04 Feb 2005 Posts: 13
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Posted: 11-19-05 19:07pm
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This is questions you need ot ask the
family
you may contact them at r
ocking4epilepsy@yahoo.Com
i do know that all proceeds do benefit us
with epilepsy
i know last year they gave to a camp for
kids thru the foundation
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004 Posts: 252 Location: Conn
Thanks: 2
Thanked:0
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Posted: 11-19-05 19:19pm
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Thanks, I will just go read the foundation
financial report. It lists those who give
over $500-$1,000,000.
Those camps are such a great thing for the
kids!
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emmy1
New User, Becoming EHEALTHy
Joined: 04 Feb 2005 Posts: 13
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Posted: 11-20-05 12:54pm
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Good idea, you may want to email them and
ask what state the camp was in? So you
won't have to look through all states.
That may take awhile.
I know they have been doing fund raising
for about 5 years now.
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004 Posts: 252 Location: Conn
Thanks: 2
Thanked:0
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Posted: 11-20-05 15:22pm
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Oh I don't mind looking it up. Usually
the national would have it anyway. Thanks
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emmy1
New User, Becoming EHEALTHy
Joined: 04 Feb 2005 Posts: 13
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Posted: 11-20-05 16:55pm
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National does not have records of funds
donated to affiliates.
My family has donated here in our state
and it is not listed on the national
financial report,
i stopped and looked now to see seeing the
comment you made about them having them
all.
Each office handles there own donations
and they don't repost to national who
donated and how much
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004 Posts: 252 Location: Conn
Thanks: 2
Thanked:0
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Posted: 11-21-05 12:19pm
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Thanks. National does have the affiliate
sites on it as well, however. Easy to
contact them...
Too bad the cafe express does not say how
the funds are used...Oh well.
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emmy1
New User, Becoming EHEALTHy
Joined: 04 Feb 2005 Posts: 13
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Posted: 11-21-05 17:44pm
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Have fun contacting all states seeing you
have no faith in this family.
One thing this family doesnt do is go
around and doubt others
they don't trash you for scaring little
kids with a troll doll with wires taped to
its head and when you send them this and
say this is a doll having an eeg well let
me make it clear. This has scared more
than one child and thats a shame
all I did was post a new online store and
you are just set out to try and destroy
this family but, even tho you may have
been a member here longer doesnt mean a
thing I have gotton the nicest pm's to
apoligize for your behavior.
So you are not as well loved as you
claim.
:lol:
your negitive posts towards this family
just shows how you antaginize them or try
to
anyone who wants to talk epilepsy and
support please pm me for my email address
I am done here.
I have epilespy and to see this member who
was told by 8 doctors and even posted this
on the efa site that her kids do not have
e she is making it up due to her own
illness.
Its a shame we who do have e come here for
support and run into people like this who
lie for attention
emmy
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004 Posts: 252 Location: Conn
Thanks: 2
Thanked:0
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Posted: 11-21-05 18:00pm
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Emmy, I had no negative post here, it is
you who seem to be reacting for no
reason.....
I have not sent any troll dolls to anyone
and have not had anyone contact me that I
have done anything upsetting to their
child.
We have not ever seen 8 doctors for our
children. My son does have a current
diagnosis of epilepsy and is on medication
for seizures.
You might find it interesting to note that
this family you defend did take their son
to 9 neurologists in just 2 years. Does
this make them bad as you seem to think it
is wrong to see more than one doctor?
Why would you feel the need to lie about
me on line? My story does not change.
Anyone can read and see that what I say is
true.
All I asked was where does the money go if
they say it is for awareness.
Why has this angered you. Most people
want to know where their hard earned
dollars go if they donate.
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emmy1
New User, Becoming EHEALTHy
Joined: 04 Feb 2005 Posts: 13
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Posted: 11-21-05 18:16pm
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It is so clear on all sites you post on
that you hate this family so why don't you
just ignore any topics about them rather
to try your hardest to post negitive and
try to destroy their good name..
What a support board now I know why I
stopped posting here
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004 Posts: 252 Location: Conn
Thanks: 2
Thanked:0
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Posted: 11-21-05 18:25pm
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Anyone reading my posts can see that I
have been nice and supportive. It seems
she is determined to attack me.
Again., there is nothing negative in this
post except your comments about me.
I do not know who you are. I am sorry you
have left some other site. I have been
nice and supportive of her even when she
has lied and done things to try and damage
my reputation. I have not done anything
to her.
It would be nice if she left me alone as I
have left her alone.....
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*michelle*
New User, Becoming EHEALTHy
Joined: 20 Nov 2005 Posts: 6
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Posted: 11-22-05 15:11pm
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:?: :?: ok! I am new here and new to
being diagnosed with epilepsy and a thread
about awareness sounded interesting
considering it's epilepsy awareness month.
I have got to say though (at risk of
getting flamed too???) what happened???
How did you go from talking about money
and donations to this? (and you don't
have to fight over the states. Google
"rocking for epilepsy" and you get iowa.
One less fight there, ok?) all I saw was
a question about money- how that got to
troll dolls and doctors is beyond me- but
what I opened this thread for was my
interest in raising awareness.
Ok, so I would like to support something
to raise awareness and checked out the
link, emmy. If you buy something
somewhere to support a charity or
nonprofit you don't have to privately
email them to find out how the donation
works- it's stated right there. In any
case, their email address does not appear
to be on that webpage- nor are any claims
to donate any funds to a specific charity
or foundation of any type at all.
That page simply says "opening eyes and
erasing the ignorance to epilepsy." since
that completely eliminates any details
about how they use the money they receive,
the question: where do our hard-earned
donations go and how is this documented"-
is a good one! All foundations and
non-profits are governed by laws requiring
that people be able to find this out.
There's nothing wrong with wanting to be
sure about where our money is going.
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Banister
New User, Becoming EHEALTHy
Joined: 03 Dec 2005 Posts: 4
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Emmy I Agree.
Posted: 12-03-05 00:44am
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Emmy, I agree. I have known jen for quite
some time, and came across this thread
just tonight. It infuriated me. I have
seen this woman thrash this family on
other forums, and don't think they are at
all deserving. Jen does a great job
promoting awareness. While this woman
(whomever she thinks she is) tries to make
her look bad, I tracked down some of
kayakmom's (as you call them) flames...
Here they are:
******************************************
******************
you are beary nice to some,
others have been called nasty names, had
calls at all hours from your office and
been lied about by people in your
organization
i'm lost thread
this might give some an idea of your
tactics to embarass and harrass some
people....
(though we know you do not do this with
everyone)
now for a bit of sarcasm and arrogancy
*****
it was so wonderful that dan and jen were
able to send free epilepsy foundation
materials to piesmommy's library!!
When you say a service is free, that means
free of all charge to most people, I
think.
Since you specify the priority mail, you
might want to change the free statement to
"the only cost is return priority
shipping"
there have been posts here when bear has
been delayed in returning. Iagree with
mel, it is sad to try to humiliate people
who are struggling. You do not know if
they have had a hospital stay or other
emergency.
Praying that this family is ok....
Praying that the bear will be returned so
kelly and others do not have to be
disappointed. The good part is that you
do have 4 other traveling bears so the
work can continue.
Sorry you get so upset here. People here
have been very supportive of you and kind.
*********
...There are more posts like this if you
want to thrash me too... I will not stop
at this one until you and your people
leave this family alone.
John starr
proud supporter of the wader family
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emmy1
New User, Becoming EHEALTHy
Joined: 04 Feb 2005 Posts: 13
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Posted: 12-03-05 02:45am
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Why thank you john
the waders is not the only family she does
this to.
When she says jump and you don't say yes
maam how high she then gets her emails
sent to you with her true colors.
Our family has gotton one of them about a
year ago.
She tries to be kind on the sites just to
pull another victum in on her puppet
strings
i will also tell you right now she will
email at least 2 of her puppets to come
here to back her up as she always does and
she will also use a differant name seeing
she has a few she slithers thoughout sites
like the snake she is.
What is funny is I found this posted on
another site.
We do ask people not to attack each other.
We do ask that they bring problems to
the moderators and, as I have posted
repeatedly - wait for us to investigate,
rather than responding in kind.
There are no favorites here.
No negative behavior is tolerated, no
matter whom the individual is.
No one except the moderators may tell
another individual to post or not post.
Third-party reports (she told me that he
told her not to post) often are as
reliable as a game of operator; repeating
them to a public audience frequently
doesn't help. Ask the original
individual to contact me directly.
I alsost pee'd my pants when I read it.
This site is question has lost so many
members who are in need of support because
of kayakmom, or guitarmom, or kayak2mom
what ever name she is using today.
She has a few she uses to spy on others.
I know this because I have met her I know
who she is. And she has told me she feels
she needs the upper hand on others.
It is so pathetic she lies about her kids
having e to get attention. I think she
needs help and she needs to let her teens
be teens.
What is sad is where is the teens dad?
I can't understand why he would sit back
and not get this woman pych help she needs
so much
i wish she would just stop hurting others
and leave all e sites alone
let us deal with the support we so much
indeed need and we have to offer.
I am sure some where on the web she can
find a depression site to help her.
I am hoping this site sees her for what
she is and banns her so we can have a
support message board
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004 Posts: 252 Location: Conn
Thanks: 2
Thanked:0
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Posted: 12-03-05 10:39am
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Looks like other puppets are the ones
speaking now. Emmy, your quote was the
moderator's words and not mine in some
places.
Interesting that you quote with no
link.....
I do not trash others. I do stand firm to
the truth.
I am sure you do not like everyone that
you meet. Obviously not everyone that I
have met is as honest and nice either. I
have not said I have to have the upper
hand, that I recall.
You are stirring this back up. Sorry you
feel I have offended so many. I am
offended by being lied about. I do not
send nasty emails. I do not send puppets
and tell them what to write either.
Fortuanetly I have had many pm messages
and emails in support as others bent on
hurting the support community wish to
attack me. You both are hurting others
with epilepsy already stressed by this
disorder.
My children have not been lied about. The
doctors who treat them know this. My son
has been back on treatment for months now.
I have shown others his charts proving
the truth.
You need to stop spreading lies. You have
trashed me in this very thread. Not me
trashing the wader family. I simply asked
where the money went for items bought on
that site since it was not listed
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caringmom
New User, Becoming EHEALTHy
Joined: 03 Dec 2005 Posts: 4
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Posted: 12-03-05 10:53am
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I also see your words offensive kayakmom.
Its not your business on how the
contribute there moneys.
The wader family has done nothing but good
in there quest.
I have found inspiration in there story.
I think you need to watch your wording and
think before you speak. Those are wise
words....
Please listen....
Caringmom....
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Banister
New User, Becoming EHEALTHy
Joined: 03 Dec 2005 Posts: 4
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Posted: 12-03-05 11:26am
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Emmy,
there are many in this world that have
psychiatric issues that refuse to admit
that they have it. I believe that
kayakmom should look up information on
munchausen's by proxy and using the
internet to obtain attention for ones self
using their children's false medical
conditons, then seek psychiatric help for
herself.
The wader family does so much good, that I
can not believe that some would spread
these lies about them.
Thank you for starting this post and
bringing out the good of the family.
John starr
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emmy1
New User, Becoming EHEALTHy
Joined: 04 Feb 2005 Posts: 13
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Posted: 12-03-05 11:38am
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John
it is amazing you bring this subject up
and I will submit a link for all to view
but of course it was edited about the
doctor telling this person she needs to
stop using this type of illness for her
own use.
Http://www.Epilepsyfoundation.Org/e
fforums/forum/messageview.Cfm?Catid=2&
threadid=32453&messageid=367504
i don't understand why anyone would wish
havign e on anyone.
Does this person not understand what we go
through having e?
It is so sad but I am glad it is now out
in the open so our fellow e friends can
see to trend with caution around this
person who is so ill.
By the way kayakmom think real hard you
met me at kids speak up
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caringmom
New User, Becoming EHEALTHy
Joined: 03 Dec 2005 Posts: 4
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Posted: 12-03-05 14:33pm
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You two could not have said it better!!
I think this person is very sick and needs
this attention to live and feel wanted and
needed. Personally I think its sick, but
thats just me.
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