Honor Epilepsy Awareness Month With YOUR Contribution

[PhylisFeinerJohnson]

Ironically, I heard on the news that the Juvenile Diabetes Philadelphia branch was moving to new quarters to house their expanded staff. At the very same time, our branch of The Epilepsy Foundation was in the process of laying off employees because of drastic cuts in state and federal funding.

I think in part, the lack of support is because epilepsy is a stealth disorder… You know that even better than most.

That’s why we need your help. In fact we need EVERYBODY’S help…to spread information to those uninformed and misinformed…to raise awareness that we’re not all crippled weirdoes. And yes, we need your money too. To fund research…to maintain supportive resources for people with epilepsy…and to someday find a cure.

The Epilepsy Foundation is stripped to the bone. That’s why they can’t afford tv spots, radio announcements, billboards and all of those good ideas you’ve had. That’s why I’m asking you now…please donate to the Epilepsy Foundation of Southeastern Pennsylvania. Simply click on the link http://www.efepa.org/donations or paste it in your browser. Or donate to the epilepsy support group of your choice.

Any contribution would be greatly appreciated. Even small donations mount up quickly. And together, all of you can make a difference. Because, quite frankly, we need friends, we need advocates, we need support, we need you. Please make your donation today.

I thank you from the bottom of my heart.

[flinnigan]

Also the South Carolina branch closed in October. How sad that epilepsy strikes so many more people yet breast cancer receives 5 times in research dollars. It really is up to us to get the word out.

[PhylisFeinerJohnson]

I couldn't agree more. And when you see all the pink stuff at the grocery store and the drug store and even the hardware store, you have to think we MUST be doing something wrong. Geeze, even my med bottle caps are PINK this month!!!

[flinnigan]

Oh no not your meds too. Sad but thanks for the chuckle.

I don't want to bash Breast Cancer awareness but I wonder if thats part of the reason we don't get any media surrounding our awareness month -Media burnout perhaps. They're an incredible media machine. I've been trying to get info out for two weeks and keep hitting road blocks. Usually my local paper is begging for news stories but no one will respond to me. I even had one lady in charge of a radio bulletin board tell me her daughter had epilepsy yet she never posted our up coming conference in Michigan. I may start my own blog but I'm not a very good writer. We'll see.

[PhylisFeinerJohnson]

I have a website, but mostly people with epilepsy read it. You've got to go out there and talk to Rotary Clubs, Business Groups, even stuff mailboxes. I wrote a letter for contributions to everyone in my email address book. People who I never dreamed of responded. You just have to flog it in people's faces...if you get money great, if you educate them, all is not lost.

Tomorrow I go to a Federal meeting held by the HHS (Health & Human Services) department about health initiaves. At least I'll be able to raise my voice and be heard. Whether that will do any good, remains to be seen!

[Cint]

Here, the Epilepsy Foundation of Colorado, is encouraging people to get the word out by posting their stories on Facebook or Twitter. Plus we have numerous activities going on throughout Colorado, so this is where my time and $$ go. Our Executive Director, recently appeared on Comcast newsmaker, to get the word out.

http://www.epilepsycolorado.org/

[flinnigan]

I just spoke with my sister and she got a pink lid on her antibiotic last month too. I find that it be really inappropriate if not down right unethical for a pharmacy to push awareness for a disease over others.

[PhylisFeinerJohnson]

I couldn't agree more. I'd even go so far as to call it offensive.

[Meetz1064]

believe that a pharmacy would do that?! UNBELIEVABLE!! Have you said anything to the manager yet??

[flinnigan]

I go to a different one. I'm going to mention it to them and see what they say. You know I think I will contact hers and let them know.

[PhylisFeinerJohnson]

Ya know, I think I just figured out all the pink stuff. It's probably licensing (where someone pays you a certain amount of $$$ to use your symbol...like sports teams and movie stars and Nascar, etc.)

[alivenwell]

Yeah....A legal issue, I suppose.
A macho product with 'pink' on it catches one's attention.
People with medical conditions may be more sensitive to breast cancer.

That grassroots issue is an excellent one. We need excellent speakers who are well informed about epilepsy. Since it is November, I suggest we get ready for creating or preparing presentations one year from now. Awareness of this disabling condition may help fund EFA in various regions. HHS is an excellent resource.

[matchu]

I posted your comment on my facebook page and my best friend writes this:

matt, stop that shit, when the eplipesy foundation works with the pharmacy to put ou8t purple lids for all scripts then you will hvae something to grip about. sounds like you need to get the the ef and find out why they havnt done the same thing....

I love this girl she is a great friend, but I need help picking my jaw off the floor.

this has really got me upset... she is calling me out on my facebook page and didn't even check her spelling.. refers to the epilepsy foundation, with ef. I like the part where it is our faults for not working with the pharmacy.. She has to know that the pharmacy does not make the medicine bottles right? please go to my facebook page and take a moment to let all my friends and family know there are others with epilepsy. search matchu rogers on facebook, be glad to add new friends.

[PhylisFeinerJohnson]

Well Ellie, my Saturday conference in Philadelphia at the HHA forum was pretty disappointing. Participants were limited to 3 minutes. And most were cut off in the middle of their presentations.

I didn't get any sense of engagement by the panel. They were passive to the presenters, few notes were taken and there was no question and answer session. In fact, there was no interchange between the panel and those present. (Note: They said something about expecting 400 people -- there were even tables set outside of the auditorium for the overflow, but only about 100 people showed up.)

Basically, the panel said their thing and then suffered through our fragmented presentations. Although I was number one as a speaker, I was cut off and so I sent the Epilepsy presentation to their website: HP2020@hhs.gov[/email].

What I did get from the panel presentation was:

The formation of a new office of Health Care Quality -- "a federal interagency workshop."
There was much talk about "framework, objectives and collaboration."
And the vision was stated as: "A society in which all people live long, healthy lives."

I found it interesting that 3 out of the 6 panel members talked about being big fans of Steven Covey (The 7 Habits of Highly Effective People.)

What has this country come to?

[flinnigan]

I actually don't want to see purple lids either. I think its inappropriate for a pharmacy to honor any disease or disorder above all the other thousands of them that they dispense medicine for.

As for the "EF" (idiot not you your friend) not doing enough he's correct to some degree. The Breast Cancer foundations are a marketing machine probably because woman are so sensitive about are bodies. It still amazes me when you read the real statistics. Breast cancer is actually the 7 leading cause of death in American women 41,426 compared to number 1 Heart Disease at 329,238 according to the CDC 2005 statistics.

[matchu]

hee hee it's a she but wont let the relationship go any further so might as well be a he lol!

She has been there for me tremendously, I think she was just miffed because I mentioned breast cancer and all it's advocacy. You are correct as she and all my friends and family have access to epilepsy information that I have personally handed them and they have computers to do there own research. Not one of them have really asked me anything although they have been there while I was having tonic/clonics and mals! I will forgive as I have been forgiven it is only right. I am still insulted though and I have that right to be.

owe and if only we could get Americans focused on something more than beer and sports, we might just live in the greatest country in the world. As of now... not so much imo.

[matchu]

I have sent an email to a AM radio station I listen to, I hope to get a response. I have heard nothing about Epilepsy Awareness in Houston, Texas.

[flinnigan]

got ya machu whats with men today my single sister has a guy she just wants to be friends with how the tide has changed.

Everyone else - I found the source of the Pink lids Walgreens.

[matchu]

got ya machu whats with men today my single sister has a guy she just wants to be friends with how the tide has changed.

Everyone else - I found the source of the Pink lids Walgreens.

Not sure but I am who listens when a guy does her wrong... I am not sure if I should wait but she knows how I feel about her. She does not want to complicate things. Were good friends and is that not what you look for in a mate? I don't understand women!

[Chris515]

Not sure but I am who listens when a guy does her wrong... I am not sure if I should wait but she knows how I feel about her. She does not want to complicate things. Were good friends and is that not what you look for in a mate? I don't understand women!

I was in the same situation once... I got tired of waiting and moved on. I wanted to be with this girl for years and she kept dating jerks, and I would help her through it, etc...