Here is a link to past your draft letter
DRAFT Senate Support Letter
I received this support letter template via email from our neurofibromatosis lobbyist in Washington, D.C. She asks that we distribute this letter to all our friends of NF so they can sent it to their congressperson in D.C. This letter is the result of our meetings earlier this year when I went to talk with the senators and Army people to continue funding for NF research. This is very important and I know everyone with NF will want to help. Thank you.
Okay, this will remove the last barrier to 100 percent compliance with Sir Reggie’s command. Here is a website with names and addresses of all 100 Senators. http://www.senate.gov/general/contact_information/senators_cfm.cfm – Bart Moore
The Honorable (Senator’s Name)
Washington, DC 20510
Dear Senator (Name):
As someone closely touched by Neurofibromatosis (NF), I write to request your support for the Army’s Neurofibromatosis Research Program in the Fiscal 2010 Department of Defense Appropriations bill. The House of Representatives included $25 million for NF research as part of the Congressionally Directed Medical Research Program (CDMRP) for FY2010, and I write to encourage the Senate to also include $25 million for this program when the FY2010 Defense Appropriations bill is considered. Significant advances in NF research have been made, due in large part to the Army’s program, and leading researchers are now on the threshold of a treatment and a cure for this terrible disease. Continue reading
The guys and I went to PJ’s last night and had a ball! Met a bunch of new people, handed out a bunch of cards. Good times! I think Houston Roller Derby is tomorrow night!!! Can’t wait to see all my friends there! I missed the championship bout last week. The Bosses won over the Psych Ward Sirens. Well, I love them both!
Last night was the first steak night in what seem like 2 months or more. I had a Tremendous time. I haven’t seen the guy’s in a while, so it was perfect timing.
Main topic was about our upcoming NF camp in Burton Texas. I’m hoping it will be nights like the one we had last night. If you haven’t been to a steak night, you are missing out. Post on the blog if you ever want to join us. It may be a night of our Reggie Bibbs Orchestra. You can’t miss that. Enjoy the photos, and let’s keep the comments rolling in on this topic.
there I was, back in my home town for the PA HOG Rally. Nothing to do with farm animals, HOG stands for Harley Owner’s Group. The rally was a bit of a let down, compared to some we have attended over the years, but being back home was great.
Thought you might want to see my small effort to get the word out in Western PA.
A friend of mine and Reggie’s, Jason McElweenie, submitted Reggie’s name to host a panel for next years SXSW: Becoming An Inspiration – One Pixel At A Time http://panelpicker.sxsw.com/ideas/view/2339
The description is as follows:
Reggie Bibbs has been on a one man crusade to raise awareness for neurofibromatosis (NF) come listen to him tell his story and help you and your organization turn your clients and friends into raving fans for your company or group
Here’s where we need your help: This is a 3 step process. A panel is submitted and then placed in the PanelPicker where the public comments and votes on it. After the voting and commenting is done a group of SXSW insiders vote on which ones they like and the board at SXSW also votes on which one they like. If the public comments and votes a lot for this one we have a chance of swaying the other two parts of the in our favor so now we have to promote, promote, promote.
I hope this can further raise awareness for Reggie and NF, speaking to a crowd of early adopters can do nothing but help raise awareness. If this panel is selected I say we plan a sort of media blitz to make Reggie the unsung hero or face of the 2010 SXSW conference. First thing we need to do for Reggie is get him on Twitter I have registered his name http://www.twitter.com/reggiebibbs.
Can you send the PanelPicker link above to everyone you know and ask them to not only comment but also vote for the panel?
This would be an incredible experience for Reggie as well as a great boost to his mission to spread the word about neurofibromatosis.
If you could take a few minutes to help, it would mean the world to me and Reggie!