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

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

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!

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.

Oh I don't mind looking it up. Usually the national would have it anyway. Thanks

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

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.

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

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.

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

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.....

:?: :?: 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.

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

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

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

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....

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

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/efforums /forum/messageview.Cfm?Catid=2&threadi d=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

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.