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NF Lobbyist in Washington needs our help!

Here is a link to past your draft letter

DRAFT Senate Support Letter

Dear friends,

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. – Bart Moore

The Honorable (Senator’s Name)

(Office Address)

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.

NF involves the uncontrolled growth of tumors along the nervous system, which can result in terrible disfigurement, deformity, deafness, blindness, brain tumors, cancer and death. NF is the most common neurological disorder caused by a single gene and it affects approximately 100,000 Americans. However, because of NF’s close connection to many common diseases and disorders, such as cancer, learning disabilities, heart disease, memory loss, and brain tumors, research on NF stands to benefit 175 million Americans in this generation alone.

NF research can also benefit the military since the disease is connected to nervous system impairment and war-related illnesses. Because NF manifests itself in the nervous system, the Army-supported research on NF addresses peripheral nerve regeneration after injury from such things as missile wounds and chemical toxins. Findings generated by research on NF can make important progress in our understanding of wound healing, as well as in investigating genetic mechanisms which involve not only the nervous system, but also other cancers.

The modest investment in NF research over the past thirteen years has already resulted in major breakthroughs. However, I believe that we must continue to invest in research if we are to continue to advance towards treatments and cures for NF and the numerous diseases associated with it. I ask that you include $25 million for the Army’s NF research program in the Fiscal Year 2010 Department of Defense Appropriations bill.

Thank you for your attention to this request.

35 thoughts on “NF Lobbyist in Washington needs our help!

  1. I hope we can get a lot of help with these letters to Washington DC. shur would make a difference.

  2. 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.

  3. Thank you Bart. I will see if we can past this link with the blog post.

  4. dear friend Reggie, I hope I keep fingers crossed that everything works out. Reggie Thank you for everything you do for us, NF Your friend, Peter Molcan Slovakia 🙂

  5. Peter my friend, Thank you for posting on my blog. I hope you will feel free to visit often. It is great seeing you on facebook as well.

    Yes lets hope for the best in Washington. I’m sure the help will spread far and wide. To your country and beyond.

    Your Friend,


  6. I wonder if there is a way, if print up couple letters (each to the Texas Senators) and have every one or as many we can sign it at camp. I have not received anything from the NF office in Dallas on this and I am sure many of the campers coming may not be aware of this.

  7. John, good idea. I’m sure Susan has the same information. She may very well add it to the Texas NF Foundation site as well. I would rather talk to someone at the Dallas office before bring letters such as this for people to sign at camp. Don’t know how much time that would take with what is already planed at camp.

  8. Right, I would not do this without Cindy & Staff approval.

  9. Better yet, just email each a copy of the form letters

  10. That will work as well.

  11. Its been kind of quite around here on the blog. I’m here hoping to get some visits.

  12. Hopefully, people aren’tleaving comments because they are so busy voting for you on the SXSW site, , and sending letters to Congress supporting funds for NF research. That’s where I think everybody is.

  13. I’m impressed with how many have been to the SXSW site. I hope we don’t crash the site. It feels good that people are voting in my favor, to talk about what we are doing to spreading awareness of nf via internet.

  14. I have voted and sending off my two letters. Is Kay Bailey still serving as senator or did she resign to run for governor of Texas?

  15. John, Thank you. We can always count on you.

  16. I have been busy with the kids and the first week and a half of school. I have kid stuff every weekend until the end of October! I will get on and start voting right now while I have more than 30 seconds! So sorry it has taken me so long. My nice quiet (if that’s what you want to call it) summer is now over and all hell has broke loose!!!!

  17. done.
    i will email this link to my friends also. So sorry I am so late on this and only get to vote 3 times. hopefully I can get more votes in from other people.

  18. For what it’s worth, you can also find and write your congressional representative here:

    And Kay Bailey is still serving the people of the great state of Texas just as ably as she was before taking on the Evil Empire of Rick Perry, meaning not so much. But at least she’s not a socialist. Right? Or is politics verboten?

  19. bigassmamma, You know I forgot you had to get the kids ready for school. I bet that was fun. And thank you for the nice comment on the panel.

  20. William, thank you as well. I’m happy that I’m learning a lot about the interweb from you.

  21. Phil, Thank you for leaving a nice comment. I’m happy that I’m learning a lot about the interweb from you. Watch yourself Phil, you don’t have faith in our Government ?

  22. What you say on the web may be held against you, can come back to hurt you. If searching for a job, employers can and do check facebook, twitter and other forms of chat, blogs, etc…

  23. No one here today? I bet all of you are too busy with voting.

  24. Not when you pWnz0rs the Interweb, JohnP. All your bases are belong to us and whatnot. Besides, wasn’t it Ben Franklin who said those who would trade their freedoms for protection deserve neither?
    And Reggie, in the immortal words of Oscar Wilde, skepticism is the beginning of faith. So I am full of faith (among other things) in your government.

  25. 1 week to go for CAMP.

  26. Phil, What can I say, but who am I to judge? I do agree with you, you are full of it. In a good way, of course.

  27. OK , Fiends today is the last day of voting. You don’t have to comment, but you can still to the site log in and vote. Even if you have voted before you can do it again. Do it today and come back here and lets talk about it here today.

  28. it won’t let me vote again. 🙁

  29. Really? Did you make sure you are logged in? I wonder if it is closed.

  30. Hello we are looking forward in the Italian study, the research is already on the threshold of treatment and recovery Neurofibromatosis Thank you Reggie ALESSANDRO Italy Palermo

  31. ALESSANANDRO, Thank you for you nice comment. That is great news from Italy. We have new hope for everyone that has nf. We should thank the great doctors, and researchers that have work so hard on the treatments that are to come.

    Thank you ALESSANDRO, for your visit to my blog.

    Reggie Bibbs

  32. Hi Reggie I think the U. S. Thank you … Italy look forward to research that is done in the U.S. do not know English well

    Alessandro Italy Palermo

  33. Hey Reggie, thought that I thank the United States …. because we are looking forward to doing research in the U.S. … I do not know English well


  34. Hi Reggie I do not know English well … I thought that I thank the U.S. research … whom we look forward in Italy


  35. Alessandro, I hope I’am saying your name correct. I think you your English is go enough to we understand. Please visit the blog myself and the others will be glad to hear from you. Register with the blog. Tell us about yourself.

    I’m looking forward to what is going on here in the USA. I hope to be a part of the new drug study that will happen soon. I will give up date dates on how well it is working on me. So stay in touch.


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