neurofibromatosis cafe

A place to talk about NF, have fun and share.

URGENT!!! NF NEEDS YOUR HELP!!!! Deadline: Wed, April 9!

Just received this from my friend, Dr. Moore, at MD Anderson. I’m writing my letter now! I hope you can too! Here are 2 links that will make it real easy for everyone to send a letter!

Or, scroll down to the bottom of this blog and you’ll find ready-made letters to key subcommittee members . All you have to do is replace Lou’s Name and Address with your own then FAX it to the number on the letter. It’s that easy!


Texas NF Letter CTF Letter

Reggie and Lou.

See below for info on the Department of Defense research program in Neurofibromatosis. It is a real good program that funds research to try to find a cure or treatment for NF but they have cut the funding down to $8M from $25M, I guess because of all this Iraq mess. I plan to write a letter to my Congress representatives and thought it would be helpful for you to also. Note that the deadline is Wednesday. I bet this would be a good topic for discussion on your Blog and might get some of those folks to write also!

Bart

Subject: NF Research Action Item – Advocacy Help Needed!

As you may know, Neurofibromatosis is one of eight disease groups included in the Congressionally Directed Medical Research Program (CDMRP). This program has been vital to many of the advances made in NF research in the last ten years. Funding has declined from a peak of $25 million in FY2005 to $8 million in FY 2008. We need your help in encouraging our legislators to preserve this program.

Senator Tom Harkin (D-IA) is circulating a “Dear Colleague” letter asking his fellow Senators to sign on and support a $20 million dollar appropriation for FY 2009. It is important we write to both our Congressman and Senators, but the deadline for signing this letter is April 9th. We all understand that our country faces financial challenges, and $20 million is a high ask in this environment. However, the funding invested in this program has produced tremendous results, and with enough support we hope to preserve this program with a modest increase.

If you can do only one thing this year to support NF research, I am asking you to write a letter this weekend and fax it your Senators, urging them to sign onto Senator Harkin’s letter.

Sample letters for this program, and links to the House and Senate website to obtain their contact information can be downloaded from our website at https://www.ctf.org . The strongest appeal you can make to your legislator is by a faxed letter (followed up by mailing the hard copy), but emails and phone calls will help as well if you do not have access to a fax machine.

Advocacy is a numbers game – the more letters we can generate to our elected officials, the better our chances to secure continued funding for this program. Please ask your friends, family and neighbors to write on behalf of NF research as well.

Best regards,

John Risner, President
Children’s Tumor Foundation
Ending Neurofibromatosis Through Research
95 Pine St. 16th Floor NY NY 10005
212 344-6633 x249
http://www.ctf.org

Ready made letters to key subcommittee members. Just click on names, replace Lou’s name and address with your own, print and fax to the fax number at the top of each letter.

bishop
boyd
cramer
dicks
frelinghuysen
hobson
kaptur
kingston
lewis
moran
murtha
obey
rothman
lee
tiahrt
visclosky
wicker
young

April 7, 2008 - Posted by | neurofibromatosis, nf | , , , , ,

67 Comments »

  1. I hope this is something we can all be a part if. Every one on my email list will get this as well.

    Comment by Reggie Bibbs | April 7, 2008 | Reply

  2. Count me in!

    Comment by - the blogger formerly known as Lou | April 7, 2008 | Reply

  3. Thank you. I have been getting emails from friends saying they are writing and supporting.

    Comment by Reggie Bibbs | April 7, 2008 | Reply

  4. In the past, the DOD has funded grants to some of the most prominent scientists, as well as promising NEW scientists to do cutting edge research on NF. This research has led to discoveries that put us much closer to developing a cure or effective interventions, but we aren’t there yet. That’s why we should ask our representatives to increase, not decrease this funding. Every voice counts!

    Comment by Bart | April 7, 2008 | Reply

  5. I will try to get one in before the deadline I am still NOT feeling very good my head hurts bad and I am going to lay down a little while I should be back later I really hate feeling like this it makes me feel like NOT doing nothing

    Comment by Brian | April 7, 2008 | Reply

  6. Thank you Bart. I sent out this information to a friend of mine. She has also sent out the information to her friends as well.

    Comment by Reggie Bibbs | April 7, 2008 | Reply

  7. Brian hope you feel better. Thank you for your help.

    Comment by Reggie Bibbs | April 7, 2008 | Reply

  8. me too Reggie I hate feeling like this and also anything to help NF or at least try to help you know all the help we can get helps also hopefully one day there will be a cure

    Comment by Brian | April 7, 2008 | Reply

  9. A lot of people who don’t have NF are really pitching in!!! Kudos to all of you!

    Comment by - the blogger formerly known as Lou | April 7, 2008 | Reply

  10. I saw this coming, even on 9.11.2001, I said to my dad, well theres go our funding. I been doing this each year since in the 90s.

    Comment by JohnP | April 7, 2008 | Reply

  11. John I think we are going to get a lot of letters in this time.

    Comment by Reggie Bibbs | April 7, 2008 | Reply

  12. Just sent my letter to Congresswoman, Sheila Jackson Lee of the 18th District.

    It’s really easy! I went to the CTF link above and it gives you sample letters and a link to find out who your representative in Congress is.

    Go to: https://www.ctf.org/volunteer/advocacy/

    Texas NF has a real easy link too. It’s at http://texasnf.org/Congress_letter2.php

    You can email the letter which is great!!!! Do it now before you forget!!!

    Comment by - the blogger formerly known as Lou | April 7, 2008 | Reply

  13. I just called Sheila Jackson Lee’s office. I had to leave a message because of the time I placed the call. I just may call again tomorrow. I also sent my letter to Senator Rodney Ellis.

    Comment by Reggie Bibbs | April 7, 2008 | Reply

  14. To all:
    You definitely need to send a letter to the congressperson who represents your district. If you go to the CTF link and scroll all the way to the bottom, it provides a link to get you started. I am about to print out letters to the Committee members that oversee this legislation. The more, the better!
    Lou

    Comment by - the blogger formerly known as Lou | April 7, 2008 | Reply

  15. good morning everybody

    Comment by Brian | April 8, 2008 | Reply

  16. Reggie, it was good to see you a little while ago at MD Anderson and I enjoyed chatting and looking at your photos. I applaud your plans for writing our representatives and getting others to do the same.
    Only 3 weeks to National NF Month !!

    Comment by Bart | April 8, 2008 | Reply

  17. Just sent a slew of faxes to the subcommittee. 18 in all. Beat that, Reggie!

    Comment by - the blogger formerly known as Lou | April 8, 2008 | Reply

  18. Are you challenging me?

    Comment by Reggie Bibbs | April 8, 2008 | Reply

  19. I just got home and I have email to address now. I will come back to the blog when I’m done. Thanks Bart It was great talking to you today. I will upload the photo shortly. The couple that took the photo of us are from New York. I came home and I see they ordered shirts. Thank you friends from New York. Best of Luck to you.

    Comment by Reggie Bibbs | April 8, 2008 | Reply

  20. Well….All my bags are pack, I am glad to be going, I’m leaving on a jet plane, however I do know when I be back again….Aloha…going to Hawaii.

    Comment by JohnP | April 8, 2008 | Reply

  21. I like that John. That’s a good song. We are going to miss you. I know you will have a good time. Can’t wait to hear all about it.

    Comment by Reggie Bibbs | April 8, 2008 | Reply

  22. Brian is having computer problems. He hope to be back soon. I will let you all know if I hear anything else.

    Comment by Reggie Bibbs | April 8, 2008 | Reply

  23. Good Morning grew. It’s early and I’m fixing to go have my scan. I will be back here just as soon as I finish at MD ANDERSON.

    Comment by Reggie Bibbs | April 9, 2008 | Reply

  24. April 9: Checking the computer for last minute mail, and flight status. News talking more flight cancels on AA, mostly for the MD80s, sure hope not my flight, there be over 300 people be mad.

    Comment by JohnP | April 9, 2008 | Reply

  25. Reggie, I enjoyed chatting with you as well. After we asked the nice couple to take our photo I had to leave to go back to my day job. But as I walked away I saw you using your charm on them. You are getting real good at educating the public about NF. I hope your PET scan goes well today.
    Later……………

    Comment by Bart | April 9, 2008 | Reply

  26. Hi Bart

    I did have my PET scan and as far as I know, it went well. I was finish early. I almost called you after the scan. I was going to give you something to give Sara.

    Comment by Reggie Bibbs | April 9, 2008 | Reply

  27. Hi there Everybody

    Comment by Shelley | April 9, 2008 | Reply

  28. John I’m with you. I really hope your flight will leave when it’s suppose to.

    Comment by Reggie Bibbs | April 9, 2008 | Reply

  29. Reggie, I found out that Sara is out of town until about the end of the week.
    Glad the scan went well. Was it scary like an MRI?

    Comment by Bart | April 9, 2008 | Reply

  30. Scary? I always take a nap when I get my MRI. I always tell them, hey guys can you keep the noise down, a guy is trying to get a nap. It was the same with the PET scan. Now is twisted or what? Careful how you answer You know I have photo shop and lots of photos. A guy can do all sort of things.

    Comment by Reggie Bibbs | April 9, 2008 | Reply

  31. I guess you are still having computer problems. I hope the problem will be fixed soon.

    Comment by Reggie Bibbs | April 9, 2008 | Reply

  32. Good Morning anyone on the blog this morning?

    Comment by Reggie Bibbs | April 10, 2008 | Reply

  33. I’m here hoping to here form someone. Now I can say where is that coward Lou? Get on the blog man.

    Comment by Reggie Bibbs | April 10, 2008 | Reply

  34. April 10 made it to Hawaii..on time. Many folks did not make it to Hawaii, their flights to Dallas was caneled. So there was seats available on the plane. The weather is warm, but a very heavy overcast due to the volcanoe on the Big Island, they call it VOG. Found a wireless weak signal so I am try it out.

    Comment by JohnP | April 10, 2008 | Reply

  35. Reggie, I’m here but just lurking in the shadows.
    I sent in some letters to my representatives and told them that I’ve been on the DOD review panel numerous times and so I can vouch for the quality of the research that gets funded. It is federal money very well spent.
    Later…………….

    Comment by Bart | April 10, 2008 | Reply

  36. I’m happy you made John. Have fun in Hawaii.

    Comment by Reggie Bibbs | April 10, 2008 | Reply

  37. Hello Bart,

    Cool that you are always watching. I better be careful, but of course, no one has anything to worry about.

    Comment by Reggie Bibbs | April 10, 2008 | Reply

  38. HI there Reggie why is Lou a coward ?

    Comment by Shelley | April 10, 2008 | Reply

  39. He is not here. He always call me a coward when I’m not here, so I thought I would give him a hard time.

    Comment by Reggie Bibbs | April 10, 2008 | Reply

  40. Greetings from Boston!

    Comment by - the blogger formerly known as Lou | April 10, 2008 | Reply

  41. I meant greetings to everone but Reggie, of course.

    Comment by - the blogger formerly known as Lou | April 10, 2008 | Reply

  42. Hey my friends, everybody but you know who. I just got word that Brian is going stir crazy. Yes he is. His computer has seen it’s better days. Good news to end the story. He is getting a new computer and will be back just as fast as he can open the box.

    Comment by Reggie Bibbs | April 10, 2008 | Reply

  43. Cool Reggie Cool

    Comment by Shelley | April 10, 2008 | Reply

  44. Shelley you drinking coffee

    Comment by Reggie Bibbs | April 10, 2008 | Reply

  45. I drank my coffee today Reggie

    Comment by Shelley | April 10, 2008 | Reply

  46. Wondering if Lou is behaving

    Comment by Shelley | April 10, 2008 | Reply

  47. Shelley of course Lou is not behaving.

    Comment by Reggie Bibbs | April 10, 2008 | Reply

  48. Hi all, how is everyone? Why is Lou in Boston? Or should I say Why do they let him in Bostom? lol😀

    Comment by Patricia | April 10, 2008 | Reply

  49. Maybe he is running. lol

    Comment by Reggie Bibbs | April 10, 2008 | Reply

  50. Run Lou, run!

    Comment by Patricia | April 10, 2008 | Reply

  51. LOL!

    Comment by Reggie Bibbs | April 10, 2008 | Reply

  52. Good Morning, Patricia today is not Friday is it? LOL

    Comment by Reggie Bibbs | April 11, 2008 | Reply

  53. April 11: Aloha and Good Morning. Well morning here, afternoon in Texas. If AA should cancel my flight here, be no complaints here…..

    Comment by JohnP | April 11, 2008 | Reply

  54. That would be nice to get a few extra days.

    Comment by Reggie Bibbs | April 11, 2008 | Reply

  55. I am still in Boston. Came here for a business conference. These guys are partiers! However, you will be proud to know that represented the Texas contingent (me) with unerring drunkenness and outlandish behavior. Moving slow this morning…must have coffee!!!!

    Comment by - the blogger formerly known as Lou | April 12, 2008 | Reply

  56. Hey there yall Im here on my 2nd cup of Starbucks

    Comment by Shelley | April 12, 2008 | Reply

  57. Hey Lou I have heard about those business conferences. Just remember no paper trail and photos. Then we can say……LOU you are safe.

    Comment by Reggie | April 12, 2008 | Reply

  58. I wonder If John would mind sharing some of all the fun he is enjoying? I’m not sure if you have a shirt John, it would be nice to wear one if you have one. A Just ASK! Shirt.

    Comment by Reggie | April 12, 2008 | Reply

  59. oops sorry I wasn’t logged in.

    Comment by Reggie Bibbs | April 12, 2008 | Reply

  60. I haven’t heard from realmere1. I hope you come back to the blog. It’s fun when you are around.

    Comment by Reggie Bibbs | April 12, 2008 | Reply

  61. Saturday April 12: No I do not have that shirt here in Hawaii, that would be something to think of next time. Last time while I was in Hawaii, last year, I did play my game STUMP THE DOCTOR, when I asked them a question on NF, one flunk and another maybe I give him 65%. I may be meeting some one with NF I met through the NF Chat some years ago. I have already met several others in the past. I do not know why Cindy does not want to do our camp over here, I think it would be great.

    Comment by JohnP | April 12, 2008 | Reply

  62. Reggie are you being good ?

    Comment by Shelley | April 12, 2008 | Reply

  63. CAN’T DRINK ANYMORE!!! COMING HOME.

    Comment by the blogger formerly lnown as lou | April 12, 2008 | Reply

  64. John next year lets not take no for an answer. Camp in Hawaii.

    Comment by Reggie | April 12, 2008 | Reply

  65. Lou they have drinks on the plane don’t they?

    Comment by Reggie | April 12, 2008 | Reply

  66. Shelley of course I’m being the perfect angle.

    Comment by Reggie | April 12, 2008 | Reply

  67. I’m home!

    Comment by the blogger formerly known as Lou | April 12, 2008 | Reply


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: