i totally agree with everthing you say i have suffered with epilepsy 25 years and i never hear epilepsy mentioned very much.were i live they have nothing about epilepsy month like they do with cancer.

Though this is frustrating, it is partly because those foundations have done an excellent job in the area of PR, and they have removed the stigma attached to those diseases that is still atached to epilepsy.

It is up to each of us to speak up, do our part to try to find opportunities to share at schools, places of business, and in public about EP.

Ditto... not one word from any media source where I live... I agree with race121- we need to open our mouths.

Not even the Discover Health channel can join in celebrating our month!!! What is up with that???? I've been wondering this myself since the start of November...

thats true eliza. i love watching discovery health channel. i think i might finda a way to contact them. i dont know yet. but true. all of these ideas are true.

I'm curious -- if NOVEMBER is "our" month, then why is the March not in November???

I completely agree! I am going to send this message to my sons school maybe we can get something done. Never hurts to try.

Just to let everyone know--this is what I am doing for some ideas:

1. I am contacting the schools in my area to see if they will allow me to come talk to teachers during a teachers meeting OR hand something out to teachers that includes links to websites they can visit.

2. I am going to the PTO meeting for my sons school this week to do the same.

3. I am trying to (though it has been hard) to contact the major employers in my area and get a hold of their "safety" coordinator and department heads. Most large employers have a safety coordinator. This could become a topic in safety meeting.

4. I emailed the link to Dr. Hilary Jones online video to everyone I knew.

The biggest thing is IF YOU DO THIS make sure the information you give is ACCURATE INFORMATION!!!

The video given online by DR. Hilary Jones from the UK is very good. You can also even just print info from the epilepsy websites to give out or go over. but at least your doing something!!

I agreepeple think someone dropping and shaking for a minute then being able to function not too long later is no big deal when it really is-they aren't told that each time it happens it is causing brain damage and that it is a VERY big safety issue where people have died or are always in danger of hurting themselves-I guess for them falling and needing a few stitches doesn't count like cancer does-it really is kinda sad for people to think that way since they have no idea of the mental stress a lot of us go through
Dante~

AMAZING IDEAS...LETS LET THE WORLD KNOW THAT WE ARE TOO!!

This was a wonderful discussion everyone. I have some great ideas with local schools and buisnesses as well. I hope that maybe, just maybe next year will be better for us. Maybe we can raise more awareness.

i agree davata. 100 percent. With all the new cases of people suffering from epilepsy, i cannot understand why their is not a lot of support for this disability. With you 100 percent on the matter. thanks for bringing it out. Needs to be addressed to the public.

I agree full heartedly. You should start something in your town

Hi I just found your post and wanted to share this with you.


This group is started by our 9yr old daughter regarding her PURPLE DAY campaign. SHe wants to have this group to show pictures of the day and to keep you updated for future Purple Day events. She wants to make this yearly and hopes each year it will get bigger and bigger. So that she can reach her goal of PURPLE DAY going worldwide.
Here is a letter that she wrote about the event.

Hi my name is Cassidy and I am 9yrs old and have Epilepsy.
I was hoping that you would wear purple or lavender on March 26th.
for purple day Becasue I want children to know that if you have Epilepsy
that you arent alone and that other kids and pepole have it to.
I want pepole to know that you dont have to be worried or scared and
that there are different types of siezures.
March is Epilepsy Awareness month and lavender is Epilepsy color.
You can learn more by going to these web sites as well

http://www.epilepsyns.com/
or
http://www.epilepsymatters.com

Thank you from

We have helped her start a group on facebook and she has pepole and groups from all over the world supporting her and joining in.
Thanks for reading, if you have any questions please feel free to contact me.
Thanks
Angela

This was her first year for doing Purple Day and it was a great sucess.
She has the support of The CEA.
She was on the local news, did interviews for 3 radio stations. She even contacted Paul Shaffer of the David Letterman Show and he wore a purple tie on March 26th to help support her. She also contacted every MP of Canada and recieved great support from them as well.
Universities across Canada also Participated.
There was lots more that happened and she is hoping and working already to make this yrs Purple Day even bigger.
You can check out all she has done so far on her Facebook Group (Purple Day for Epilepsy) and what is being planned for this year.
Take Care
Ang