Migraine

You guys may get ticked at me for saying this but you know what, go right ahead.

I talked to Teri yesterday and I found out that we still have members on here that have not sent their AHDA letter.

What are you waiting for??? The deadline is today.

You come here expecting support, and help and some guidence through this disease - and we are here for you. We are asking you for 5 minutes of your time to better your heathcare. But some of you can't do that.

We know who sent out the letters and who didn't. Maybe you thought that your letter wouldn't matter - but it does, it really does.

I'm writing this now - crying. Crying to the one group who I really thought would understand the pain that we go through and want so badly to get this letter out there.

I am begging you - please sign this letter - go to the link right HERE. It will take you right to the page - you just have to fill out your address and say a few words.

It seriously could not have been made any easier.

We all give so much of our time to you - couldn't you give some back? Maybe some of you don't realize how hard Teri works for us on this site, among the other millions of things she does. She hasn't slept - she's losing her voice - because she's been fighting for us.


Now do you feel like taking a second and giving her something back to better your life?

Eileen, Have hope, there is still today. I have faith that our forum family members who have put this off until the last minute will rise to the challenge.

That being said, let me jump on my .

Don't forget that "If Migraine is present on your side of the family . . . there is a 50% chance that your child will inherit Migraine disease; if on both sides of the family, 75%." (from "Ask the Clinician" Monday, January 21, 2008)

For those of us with children and those who plan to have children, that should be enough of a push to send a few words in a letter to encourage headache research. What if we had to deal with migraine disease the way our grandmothers did? I want my children and all of the children who deal with this disease to know a better way than we know.

My daughter inherited her migraines from me (and my MIL); my son was adopted from Russia and he has migraines. What are the chances of that?

I sent my letter - for me, for my daughter and for my son. Each suffered in different ways: my daughter had such pain that she'd lay in my lap and cry, she had visual and auditory auras that scared her, she had Alice in Wonderland syndrom. My son has terrible pain, light and sound sensitivity, he throws up and runs an extremely high fever.

It broke my heart to have my daughter lying in my lap crying; it broke my heart to see my son curled up in the fetal position on the floor, moaning in pain.

I'm 46 and maybe we will see some progress in my lifetime, I hope we see it in my kids' lifetime.

Send your letter!

quote:

Don't forget that "If Migraine is present on your side of the family . . . there is a 50% chance that your child will inherit Migraine disease; if on both sides of the family, 75%." (from "Ask the Clinician" Monday, January 21, 2008)

Thank you Eileen, I couldn't have said it better.

I am deeply saddened by the lack of motivation on the part of our forum family to email our Representatives.

Me too Nancy.

I mean - what else can be done?? It couldn't have been made any easier!

quote:

Originally posted by Nancy Bonk:
Thank you Eileen, I couldn't have said it better.

I am deeply saddened by the lack of motivation on the part of our forum family to email our Representatives.

Done--

Just an idea that would help poor distracted brain-foggers like me in the future: when you write a topic and put "today's the deadline" please put the date of the deadline.

I didn't realize which "today" was the deadline.

We have a similar problem on a weather bb. We get mixed up with which thread is for which storm system unless we put the date in the thread title.

Just a thought--

Hi everyone,

Please, guys--write those letters!

Friends and relatives who don't even suffer from migraine disease wrote letters when I asked them to...

We should ALL be jumping at the chance to advocate for research $$$. We're the ones who truly know just how awful this disease is!

As Liz and Deb said, if you don't want to do it for yourself, PLEASE do it for your children and grandchildren!!!

jenny

MW-

Good point about the deadline...will keep that in mind for the next phase!

Thank you.

I got mine sent out and sent it to the other two people in my life who deal with my migraines more than anyone else. And then I hassled my husband to send his! He said my email read like a form letter, lol. Whatever works, I guess!

But yes, this is very important. It's very easy, even when you decide to add your own personal story into it.

I would hope this isn't an indication of the stereotypical attitudes many hold about migraine disease as "just a headache" and not worthy of attention. If it is, we really have long way to go.

I'm also very upset.

For me.
For you
For us.

Guys,... I guess I'm preaching to the choir in here... But gosh darn it- these things only work when there are enough persons from different areas to get their congresscritters involved in the issue. If only a few of us do it, it's not as effective as if we had blanketed the whole USA.

Please. You know who you are- and you know what and if you wrote. And if you didn't, you know that too. And the next time you have a migraine, or deal with this disease, you'll know what YOU personally did to affect change. I bet it won't feel too good if you have to think "Why didn't I?" "Why didn't I sit down and write something... or even just send the letter as is- without any addition to the text?" Don't be that person.

My congressman knows how I feel. Does yours?

Guys - I love you bunches, you are awesome! And everyone who has taken action is triple super awesome with fudge sauce on top! And if you haven't it's not too late to get your fudge sauce and your cherries, even! I'll even give you marshmallow if you prefer!

I want to put in another perspective though - my colleagues who coach non-profits tell me - when you have a list or organization that is not formed specifically for the purpose of political action (like this one), getting higher than 2% participation in a call for political action is outstanding. We were at 5% sometime last week, I don't know where we are now. For a list that is formed specifically for the purpose of political action (like the AHDA mailing list), getting 50% participation in political action is outstanding.

This is not to let anyone off the hook. People are very slow, very reluctant, very confused, very cynical, about responding to calls for political action. This is "ordinary" people I'm talking about, not just people with a chronic disease! So we have a challenge here, to give up our reluctance, confusion and cynicism and do something!

What I want to make sure everyone hears is: Teri, AHDA folks, Forum hosts, everyone who has been emailing and posting and advocating on this issue - you have done an AWESOME job! I don't know what percent of the forum and sharepost members have participated, but it's higher than the 5% it was last week and that's way, way above average. I don't know if it's enough to have the effect we want in Congress, either. Please everyone, dry your tears, take a deep breath, pat yourself on the back for the good you've done, and move on and do some more! All we have to do is keep increasing it, a little bit at a time. We WILL prevail!

- Megs

Have faith Eileen!

I actually filled mine out this weekend, though I got it b/c I am registered on the National Headache Foundation.

I also sent it to all of my friends and family to ask them to submit a letter of thier own on my behalf, knowing what I go through dealing w/ this.

You'll be happy to know that I sent this out twice (oops-lol). The first time I used the zip code search before I found out we weren't supposed to, so it went to the senate also. Then I did it again the right way. Well, I actually got an email back from my senator and it's good...

Dear Mrs. :

Thank you for taking the time to contact me concerning the National Institutes of Health (NIH). I strongly support funding for the NIH and vital research programs that are working to prevent, treat and cure devastating diseases.

You will be pleased to know, that as you requested, I cosponsored Senators Specter and Harkin's amendment to the 2009 Budget Resolution (S. Con. Res. 70) that would increase funding for the NIH by $2.1 billion. This amendment passed by a vote of 95-4.

I believe we need to make our nation's health a top priority and continue to invest in critical research. Last year, I signed a letter urging the Appropriations Committee to increase funding to the NIH by 6.7% for 2008.

Please know that I will continue to work hard to ensure that the NIH and other health programs receive adequate funding in the fiscal year 2009 budget.

Thank you once again for contacting me. I value your advice and hope you will not hesitate to contact me in the future on any issue of concern to you and your family.

Sincerely,
Norm Coleman
United States Senate

Thank you for your efforts.

This resolution is for the Senate, our started with the House. But any attention is good attention...

I'm so glad you got a response from him.

Yes, that is because I didn't realize we weren't supposed to use the zip box so the first time I sent it, it went to the senate--oops. He's the only one I've received a response from so far though but it was good so I thought that was nice that he took the time to respond (even though it wasn't supposed to go to him).

Amy :-)