March 3, 2009: LFA’s Advocacy Day
From On the Road to a Cure:
March 3, 2009 is the Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically join us on Tuesday, there are still several things you – and your family and friends – can do to help raise awareness about the seriousness of lupus.
I do encourage everyone to choose one or more of the recommended activities and participate this coming Tuesday.
Here’s a few easy ways to let everyone know that you support Lupus research and the Lupus Foundation of America, using a couple of the social networking tools we all seem to spend so much time using.
There is one very simple thing you can do in Facebook. Below is suggested text that you can use for your status on your Facebook account for Tuesday, March 3, 2009. Encourage your family and friends to change their statuses as well.“YOUR NAME is encouraging friends and family to support the LFA’s Advocacy Day. Tell Congress 50 years without a new FDA-approved lupus drug is too long http://www.capwiz.com/lfa”
If you have a Twitter account and are joining us for Advocacy Day, you can “tweet” your Advocacy Day experience. You might want to post updates such as “Heading to Capitol Hill now” or “Meeting with Senator Young.”If you’re not able to be on Capitol Hill, you can still use your Twitter account to encourage people to call their Senators and Representatives, and raise awareness about the need for new, safe, tolerable, and effective treatments. Below are some suggested “tweets.”
“Support LFA’s Advocacy Day tomorrow. Tell Congress 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa”
“Join me and call Congress and tell them 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa”
I recently cancelled my Twitter account, but perhaps I will activate a new account that is just centered around this blog. More on my to do list.
Hey Jeff,
You know, it used to be ‘more than 40 years’ and now it’s 50. Dang, it’s so unbelievable and so frustrating. I was just going to write a couple of posts, one advocacy and one more on a personal level. May I link to you on this one and send some people your way? I too just reconnected with my Twitter account (couldn’t figure out for the life of me why anyone would use it) lol, now I am using it, sometimes. I’ll be posting the suggested on ALL of my social networking sites before I weed through them to get rid of the ones I’m not using. OK, my comments are more like books, give Jenny a soft hug from me.
Great post
Michelle
Jeff:
Wanted to say thank you, and to you too Michelle, for posting this info on your respective blogs. Every bit helps and it’s truly appreciated.
My best to you,
Wick
Hi jeff,
Hope you and your wife are doing well. Well me I’ve had my ups and downs with this crap. Went to Rheum. today and refused a student seeing me. Long story short last time I let one she put me through the wringer and did not know what the word ouch means. I am grateful I told the nurse that I didn’t because the same student was their again.
Chronic Chick
@Chronic Chick: Good for you. There’s no reason to put up with that. We are okay. There’s always some new thing to deal with. Hope things go better for you soon.