Online Chat Transcript

The Kids Speak Up! alumni group got together on Tuesday, May 2, 2006, for their first online chat. Led by Board of Directors Youth Representative Elizabeth Goldberg, participants discussed eliminating stigma, researching information for school, summer camp, new ideas for advocacy and more. The following is a transcript of the conversation.

To participate in future special discussions specifically for youth and teens, please visit the Talk to Us page to sign up.

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Introduction

Elizabeth Goldberg: Hello everyone, welcome to the chat!

CJ: Kids Speak Out rocks!!! Since DC I've been playing lots of tennis. How about you? This is kinda exciting--my first chat.

Elizabeth: It's my first chat too, I think it will be a lot of fun.

Catherine Kane (moderator): Welcome, Josh, Leonard, Susie, myra, Sam and Susie!

Elizabeth: Hello everyone!

Catherine: Welcome to our first Kids Speak Up! online get-together. Elizabeth Goldberg is on our board of directors and has been involved in advocacy efforts for over 5 years, from when she was 16 to now (21!), while she's a senior in college. If you look on the website later, you can see a picture of her 16th birthday party... a fundraiser for the Epilepsy Foundation. Elizabeth, the floor is yours!

Elizabeth: Thanks for the intro, Catherine! And thanks to everyone for being here today. I'm really excited to chat with you! I'm wondering who has been a Kids Speak Up! participant in the past and what state you are from, if you are willing to share. I am from New Jersey but am at school in Massachusetts. The Kids Speak Up! Program is part of the Public Policy Institute that the Epilepsy Foundation runs every year that brings families and individuals to DC to lobby Congress for epilepsy funding and other issues. I like it a lot because teens with epilepsy can not only learn about advocacy issues and how to be an advocate but also connect with each other.

Josh Gilbert: I am from Wisconsin and was at the 2006 KSU. Am I doing this right??

Catherine: Yes - perfect, Josh!

CJ: Hey Josh - did I meet you there?

Josh Gilbert: I think so. I would know for sure if I saw you. I met a lot of people.

Joshua Danoff: I am from Baltimore, Maryland and I was at the recent Kids Speak Up!.

Courtney D: I am from Florida and was just in this year's 2006 program.

Advocacy Issues from Kids Speak Up! 2006

myra: What are some advocacy issues you discussed when you were there?

Elizabeth: This year we talked a lot about how to lobby congress people for funding for epilepsy related issues--most of that funding will come from the Centers for Disease Control (CDC). People discussed the different concerns people had - wanting to find a cure for epilepsy, better school info, better meds - and how we can ask Members of Congress to support things to make that happen

Courtney D: I remember there being lots of issues with the President's 2007 budget.

Catherine: Yes, that was an important element. There are cuts in the budget for epilepsy programs.

Elizabeth: We also talked about how to continue advocacy efforts after leaving D.C.

Courtney D: I believe our goal was to help have an impact in encouraging it not to be passed as it was suggested.

Catherine: You're right, and there's still more work to be done. Congress is considering that bill this summer!

Elizabeth: Yes, we wanted to restore funding.

jerickarose: Is there any specific reason funding is coming from the CDC? Or is it that they were the first ones to offer?

Elizabeth: The funding is coming from the CDC as the major source of health related funding for public programs (awareness, etc.). We need epilepsy issues to be written into their budget for the coming year.

Nichelle: Epilepsy awareness is key to our legislative goals. How can we continue to make our voices heard?

Joshua Danoff: Wasn't one of the other issues that no one knows about it so there is a stigma?

Elizabeth: Yes, definitely. One of the ways we can encourage Congress to help us reduce stigma is providing money for educational programming in schools - help adding epilepsy into curriculums and even money for organizations like the Epilepsy Foundation to do anti-stigma work.

Speaking Out, Eliminating Stigma

myra: What can we do at home in our town or even school?

Susie: At what level would you have the anti-stigma work? Grade school or high school?

Elizabeth: You can do anti-stigma things at all ages - teens especially can be really effective in eliminating stigma.

Alice: Is the Epilepsy Foundation doing anti-stigma work?

Elizabeth: The Epilepsy Foundation is always doing anti-stigma work. Right now they are launching a whole campaign with Amy Lee, the lead singer of evanescence, called "Out of the Shadows."

Courtney D: I never really had a problem with stigma

Elizabeth: From talking to different kids/teens/people it appears that it totally depends on where you grew up, what pre-conceived notions there may or may not have been where you grew up, etc. I was lucky to not encounter too much growing up.

Courtney D: Nice. We need people to be willing to share. Particularly celebs.

Elizabeth: Definitely. I think the website is outoftheshadows.com. Her younger brother has epilepsy.

Catherine: Elizabeth has it right. We'll be putting up new information and some cool video on outoftheshadows.com soon. We're working on details with Amy Lee, and she's got a lot of work on her plate right now, with her new album coming out this fall … this should be some great publicity for epilepsy, if her album does well

Joshua Danoff: they showed us that

Elizabeth: Yeah, I remember they did a preview at the KSU.

jerickarose: So the site is coming back online eventually? hehehe... Are the commercials going to have a nation wide release? I've heard people say they've already heard some on the raido.

Catherine: Yes, smarty! One of the interesting things I've learned working in Communications is that celebrity schedules are not like yours and mine.

How Teens Can Get Involved

CJ: Just tell kids and teachers about epilepsy and keep them aware

Nichelle: Have any of you ever given presentations about epilepsy at your school, to your classmates?

CJ: Yes, I love doing that for my classmates. The school newspaper is even doing an article.

Elizabeth: About your experience in D.C., CJ?

Joshua Danoff: well, after the program, I talked to my principal to see if my affiliate could do a puppet show about it

Catherine: ... that's a good idea. Anyone else try something like this in school? What did the principal say?

Elizabeth: That's really awesome. What do you usually say?

Joshua Danoff: He said there was no time...but I was going to talk to the students about Capitol Hill.

Elizabeth: hopefully you can still reach out in your school at least in your classes?

jerickarose: I've spoken about epilepsy in almost every different subject in school. If you have to make some sort of presentation in class, you can usually figure a way to speak on it. ^_- (If I'm not supposed to be chiming in, please tell me so)

Josh Gilbert: I talked about it at my scout meeting once. Also, I think it is important to get involved locally in our cities and towns for instance we are having a "stroll in the park" walk / fundraiser for epilepsy on May 13.

Elizabeth: Where are you from, Joshua?

Joshua Danoff: Maryland

Courtney D: I usually mention what kind of seizures I have and explain what you shouldn't and should do in such a case.

CJ: Elizabeth... why did you first decide to get involved with the epilepsy foundation?

Elizabeth: I first became involved in the Foundation because I wanted to improve public awareness surrounding epilepsy.

myra: do you tell your friends about your epilepsy?

Elizabeth: I had never learned anything about epilepsy in school and my friends didn't know very much, so I decided to get involved with the work EF was doing. I do tell my friends about my epilepsy, and it is my choice to do so. When I do I like to put it in the context of my advocacy work with the EF. I find that if I am honest people are really receptive, understanding, and often have a lot of questions.

Sam: Elizabeth, what do you like most about being on the board of directors?

Catherine: Elizabeth's the youngest person ever selected - how does it feel to be such an important voice for young people?

CJ: My friends kinda think me having epilepsy is cool

Elizabeth: What do you tell them CJ?

CJ: I tell them pretty much everything

Susie: how do you decide when to tell them?

Courtney D: How long have you had epilepsy Elizabeth?

Elizabeth: I have had epilepsy since I was 11--so 10 years now.

Courtney D: I have had them all of my life, since birth.

Elizabeth: How old are you now?

Courtney D: I had brain surgery done in 2004, and now have been seizure free for over a year, since April 15, 2005

Elizabeth: congrats!

Joshua Danoff: I had surgery too...for a tumor

Catherine: Courtney - was having surgery scary?

Courtney D: I didn't have to shave my head. Don't worry.

Elizabeth: I think that's many people's number one question about surgery--that's what my doctor told me :)

First Aid

Elizabeth: Recently someone had a seizure in a class at my college and no one knew what to do. I couldn't believe that no one knew seizure first aid! So what are some of the other things that people have done?

Catherine: Elizabeth - were you around when the other person had a seizure, or did you just hear about it?

Elizabeth: I just heard about it. I offered to go to the class and give a lesson on appropriate seizure first aid.

CJ: Susie, I do tell my friends about epilepsy and my friends have helped me when I have had a grand mal at school

Bluestown: I just had a seizure at school and my friend knew exactly what to do

Courtney D: THAT ROCKs!

Catherine: Bluestown - that is cool. How did your friend know?

Bluestown: he's a trained life guard

Catherine: Ah... I'm a Red Cross instructor. That's one of the elements in the lifesaving course, I think. What do people think about trying to get first aid courses in school?

New Ideas

Courtney D: My teacher gave a donation to the epilepsy foundation

Elizabeth: Awesome. Have you (or anyone) done anything else locally?

jerickarose: I put the EFA bracelets and seizure first aid cards in geocaches. lol!

Catherine: Jericka - I just found out what geocaches are. Cool idea - can you explain these briefly?

jerickarose: ha! Sure. Brad (from ECommunities) got me hooked on it. Geocaching is pretty much treasure hunting. There's a website where you can look up coodinates of these "caches" and you plug them into a GPS (global positioning system) and go find them! My dad is a really good geocache hider.

Elizabeth: I had not heard of that before. That's awesome!

Courtney D: Great idea. How does it work

Elizabeth: Are you asking about the geocacheing?

jerickarose: What's the best is anyone can do it, provided you can get your hands on a GPS. Even I can do it, and I have limited mobility.

Elizabeth: Ok.

myra: It would be great to get your local newspaper to write about the cache with the epilepsy bracelet when it is found

Elizabeth: Absolutely. The more publicity for these things the better. Also would be interesting because it still sounds sort of "novelty."

Research, Papers, Presentations

Joshua Danoff: for school we had to do a paper on a disease and share it to the class so I picked epilepsy

Elizabeth: cool. Good luck if you haven't already finished the project.

Catherine: What sources did you use to get information, Joshua?

Joshua Danoff: Internet and books...mostly books

Elizabeth: From the library?

Catherine: ... any chance (shameless promotion) you used epilepsyfoundation.org?

jerickarose: Oh Catherine. *laughs* Anyway, Myra, they only problem with that is I'm dating a reporter for my local paper. I've been told getting articles in would be a conflict of interest, so I would have to go for the state papers. But it is worth a shot, bigger audience after all.

Joshua Danoff: yes

Elizabeth: excellent. It's a great source, I've used it myself.

Josh Gilbert: Catherine: What sources do you think i should use for my presentation.

Catherine: There are a lot of good epilepsy sites out there. Guess which one is ranked top in Google’s search engine?

Courtney D: Hey, I am doing a paper on the ADA, my teacher said we could pick any subject.

Elizabeth: What about the ADA? Did you know that Tony Coelho (EF board of directors) helped to write it?

Courtney D: Yes he did.

CJ: Courtney don't forget to include Tony Coelho in your paper.

Courtney D: I didn't.

Elizabeth: I bet you can contact him through the EF...

Courtney D: I already interviewed him at the Washington, D.C., trip but thanks that might help later.

Elizabeth: Cool, I'm sure he could be a great resource for you.

Courtney D: I must say though, he's a hard guy to track down.

Elizabeth: This is true. But, my experience with research is that it's always worth a shot.

Catherine: I'd love to help you find information you need on our website, plus I can post more resources to answer specific area questions.

Catherine: Tony Coelho is really interested in getting young people involved in advocacy. As a former congressman, he accomplished so much for us.

Catherine: Any time you need research help, you can ask a question in eCommunities Teen forum. Send a reminder to webrequests@efa.org, and I can make the answers public so more than one person can use 'em… the same goes for sending an email to Tony Coelho or anyone at the Foundation. If you want to quote someone or interview, just let us know.

Camps

Elizabeth: CJ, can you tell us a little bit about some of the things you did last year after DC?

CJ: After D.C. last year I came home and started working on getting a camp for kids with epilepsy in California. It happening June 11-16

Nichelle: CJ that is cool. Tell us about the camp.

Catherine: Does anyone else go to the camps? Did you know... that we have a full listing of the camps on Epilepsyfoundation.org?

myra: Wow! CJ that is wonderful

Elizabeth: Agreed!!

CJ: the camp is in Yosemite and it is going to be a blast!!!!!!!!!!

Catherine: Yosemite National Park? That rocks! I didn't know you could camp there. How far is it from home, CJ?

jerickarose: Once again, I was too old to attend a camp, but when my seizures get more under control I want to be a camp counselor.

Elizabeth: I never went to an epilepsy camp, either. But being a counselor is something I should look into as well...good idea.

CJ: Jerickarose maybe be a counselor of director

CJ: It is about 3 hours from home

jerickarose: I was told by a coordinator in my area that they really like their counselors and activity directors to have some sort of personal experience with epilepsy. Even better to have it youself.

Elizabeth: Makes a lot of sense.

Courtney D: Yeah,. I want to be a counselor too.

Elizabeth: You said you were from... Wisconsin?

Susie: how do we find out where these camps are?

Elizabeth: I think there is a listing on the Epilepsy Foundation website...Catherine mentioned it before but I can't find it just right now...

Catherine: http://epilepsyfoundation.org/epilepsyusa/camp2006.cfm

Elizabeth: What is a camp like, CJ?

CJ: It is awesome. I love to see other kids w/epilepsy during camp you have fun and also learn a lot

jerickarose: I imagine all they want to make sure is you aren't going to point and laugh at the kids at camp. It's a place where they get to forget they are different, and I'm sure they want to make sure the staff is good to the kids.

liv: what if our epilepsy experience hasn't exactly been traumatizing...could we still be a camp counselor?

Elizabeth: Although I don't know how they select counselors, I would imagine that a difficult experience with epilepsy isn't a pre-req. I think any experience with epilepsy is more than enough!

Catherine: Definitely... I'd love to be a counselor, if they'd stop chaining me to my desk :)

jerickarose: Oh I can see that now... poor Catherine... alone at the office at night... with a chain from her ankle to the desk. You poor thing.

Elizabeth: haha

Courtney D: Where do you live CJ? What camp did you go to? I live in CA and go to a camp in AZ and now CA

Connecting with Other Teens

Courtney D: I am trying to make an epilepsy teen support group going. Our first meeting is June3.

Elizabeth: That's really cool. I didn't know anyone with epilepsy in high school...as I said before that's one of my favorite parts of the KSU and these ecommunities and chats is connecting with each other. Good luck, let us know how the meeting goes!

Catherine: CJ - do you keep in touch with people from KSU?

CJ: Yes that has been the best part

Teen Council

Courtney D: Elizabeth, are you the one who wants to start the teen council?

Elizabeth: yes, that is me. Thank you for asking. We are starting the youth council as part of a larger Teen Initiative this year. Watch the website/your local affiliate for updates on how to become involved. If you signed up with interest at the Kids Speak Up! program we will be contacting you as well.

Catherine: The Foundation is really excited about the teen council. While we will be sending out emails to KSU participants, we'll also be posting information on our Teen Group in eCommunities. I hope you all decide to join in future discussions.

Elizabeth: Yes, we want to have these chats every couple months

Catherine: FINALE: Please join me in a big virtual round of applause for Elizabeth Goldberg...

jerickarose: *clap clap clap*

Elizabeth: Thank you to CJ! Applause for him too!

Catherine: and for CJ Cobarruvias, who helped out on the assist. We have both ends of the youth spectrum here.

Courtney D: clap, clap, clap!!

Elizabeth: Thank you to everyone for coming...it was a lot of fun.

jerickarose: *claps even more*

Catherine: ... a clapping contest!

CJ: Thank you everyone for being a part of this

Susie: Thank you for doing this

Catherine: We hope you will continue to join us in the future. Take care, everyone, and have a great night!