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Mr.Bibbs Goes to Washington

Hello, everyone! Well, it’s that time of year again. This Sunday I will be joining NF, Inc. in Washington, DC  to represent individuals affected by NF and advocate for continued and increased federal funding of NF Research. A delegation of NF  representatives from organizations across the country,  will be visiting our Representatives and Senators. They will receive a packet of information describing our requests, and we would like to include personal stories from those who live with NF. We encourage you to send your personal story about how NF impacts you or your family, and how important federally funded research is to you. All stories will be hand delivered in Washington. Please include your name and address on your letter, and fax your letter to (630) 627-1117 or email to [email protected]

85 thoughts on “Mr.Bibbs Goes to Washington

  1. Go give ’em a piece of your mind Mr. Bibbs!

  2. It will be a quick trip then, Bart!

  3. I need the little that I have, which is still more then what adgiant has.

  4. I think there is a party at 1600 Penn. Ave, say hello to the Pres. when you go.

  5. have fun! who is going with you?

  6. I will meet the new President of Texas NF Foundation, when I get to DC. Then we will get a cab to meet the others in our group.

  7. Reggie, you may not be an NF scientist but you are an NF expert based on your on the job training.
    Good trip my friend.

  8. Do you think Washington is intrested in a contribution from a German? I would love to fax my experiences with NF to show how importand federal funded research is to all of us- but they might tell me to mind my own business…

  9. To me, it does not matter if you are from Germany, Australia or USA, we all have NF and the research will benefit regardless where you are from.

  10. Thank you Bart. I just hope the weather allows us to fly out on time.

  11. Going to be a wet day here in Dallas, maybe more so in Houston since that where our rain is coming from

  12. Gaby, the DOD’s research funds are NOT limited to the USA. They need to know that people worldwide are concerned about NF research and that they appreciate the funding they provide to find treatments. Good idea!

    I did a search and found that a total of 9 grants have been awarded to Germany (4 for NF research and 5 for breast cancer): Total Funding: $6,916,115.76

    I think the funding for NF research increased from $8M to $13.75M. A nice increase but Reggie et. al. were lobbying for $20M so maybe this year they will do that.

    Here is the DOD website, pretty interesting.

  13. Thank you Bart. We should have this posted some place on our website. Great information, Lots of people don’t understand what the DOD has to do with nf.

  14. When I was young, from birth to 19, I was often treated by the US military hospitals, (My dad was Air Force) and when the AIr Force did not have the doctors, I would go see the Army or Navy doctors. At that time, it may have been before they got into research for NF. If my dad was not in the Air Force and was not able to have access to the military hospitals, my outcome could be different now, I had many leg operations to correct the bowing and over growth.

  15. thank you for the links… I will let everybody from my suppport group know about it. I am shure that some of them will write to Washington too- or maybe I can collect their signatures….

  16. You rock, Gaby!

  17. is there a deadline for sending in our personal stories? I fear I wont make it soon enough for a hand delivery.

  18. Gaby, I think you have time. I’m not sure about a dead line. For now, I’m in hopes that the weather or anything else won’t be a problem for travel.

  19. Maybe someone should start an online petition!

    The weather report I saw said up to 2 FEET of snow in DC! I think that’s usually enough to shut down the city so play it safe.
    If you could wait until Sunday it will be clearing but still lots of snow on the ground.

  20. Flying out on Sunday. We were advised that we should move forward with the meetings for Monday and Tuesday.

  21. This isn’t DC’s first major snowstorm. I bet everything will be ok by Monday…probably…maybe…kind of.

  22. I have been listening. I think it will be ok. I got a call and a message, saying that we are following through with our meetings on Monday and Tuesday. I fly out on Sunday. Are you going to drop me at the airport?

    Haven’t heard from you Adgiant. Got a reply from Sugar Ray. He is going to doodle for us, and he wants a just ask t-shirt.

  23. Up date, on DC. @3:00p Friday. Moving forward, with the same plans.

  24. So I guess somebody needs to send him a t-shirt. Hmmmm, I wonder who we could get to do that?

  25. Humm, That could be anybody. Because Sugar Ray Leonard, called me his friend in his email today, I would be happy to send my friend a shirt.

  26. Howdy Reggie

    I just heard in the news that all the flights to and from the Washington Airport have been cancelled for the whole weekend due to heavy snowfalls… up to 19 inches…. 🙁
    Not good for short people like me. I am glad to be here in spite of the rain 😉

  27. Bart, here is the link to an online petition someone did start to help do exactly what Reggie does: increase awareness of nf. From what I understand, anyone can sign it:

  28. An online petition- great….

  29. Up date. Because of the snow storm, the date to Washington DC, was moved to Feb 17th. Which is good. I think the whole team can make it, and not just a few of us.

  30. Phil thanks for the info about the petition, that’s exactly what I was thinking about. I signed it.

    Reggie and Lou, I think it would also be tremendous to create your own petition on that website specifically asking congress to increase the fiscal appropriations for the DOD CDMRP for NF to at least $20M for fiscal year 2011.
    If half of the people who follow your blog signed the petition and sent it to ten people, etc., it could get up to the thousands.
    My 2Cents worth.

  31. Sound like a great idea to me.

  32. Good Morning to all. I’m sure by now every have heard how Washington DC was hit with the Blizzard. All Government offices are closed. The trip is reschedule for Feb 17th.

  33. So…are you staying in DC or coming back to Houston?

  34. I’m in Houston. All flights canceled, and most of everyone we schedule to speak with, was there. From the email I received, said some were showed in. The good thing is we plan to try again. Feb 17th I believe.

  35. Then you are back in Texas with the rain. Hope that the 17th will be clear and nice.

  36. Never left Houston. Didn’t go to the airport, because all flights was canceled.

  37. I signed the petition about NF! Lulu and me hope many people will sign it. kind regard Lucy and Francis

  38. Thank you Lulu and Francis.

  39. Added my name to the list.

  40. I have signed the petition, too and told my friends about it. For some of them I wrote a German translation. My support group is going to meet tonight- I hope to get a few of them to sign it.
    I will also tell them about the letters to the DOD…

  41. Hi Gaby, Thank you for your support. And a thank you to John as well.

  42. I hear they are still canceling flights in and out of DC. Hope next week is better.

  43. If it is not snowing in Washington, we still get snow from Washington

  44. lol, good point, and true.

  45. Talk about your snow jobs. Bart would you like to weigh in on this?

  46. I hear Vancouver needs snow for the Olympics. Maybe rent a bunch of U-Haul its.

  47. Looking forward to the Olympics. Speed skating, and the couple skating. Would be nice to see it to the music Bolero.

  48. You’re still hot for Bo Derek in “10.”

  49. I have not idea of what you are talking about. Especially if you are talking about the jogging on the beach. The slow motion part. Not that I have seen it a couple of dozen times. I read the reviews. Good article, just like the others I read all the time, So to speak. I’m just saying.

  50. So, tell me, where did you ever hear “Bolero?”

  51. Since it is snowing in Washington, the Federal offices are close, noticed we are not getting any snow jobs from Washington

  52. So what are you saying, adgiant? A black man can only get turned on to a seminal French Imressionist composer through late 20th century softcore porn?
    Reggie, if you like Bolero you should really check out Ravel’s arrangement of Mussorgsky’s “Pictures at an Exhibition”. Good stuff, I tell ya. And for a late 20th century softcore porn frame of reference, it might have been in “Emanuelle Goes to Mars”.

  53. Black people are always after white chicks. What’s the matter, black women aren’t women enough?

  54. I’ll check that out. I’m sure I can find it on you tube.

  55. You are correct. Good arrangement of Mussorgsky’s. Never knew about it until you post it.

  56. Forgot to comment on adgiant. I say live and let live.

  57. I know right! Black women ain’t woman enough for ya?!
    Hmph! I shall just take my ghetto fab self elsewhere! Good day!

  58. When I was young, I listen to “Pictures at a Exibition” many times. I forgot about it until it was mentioned. In the 49 states, there is some sort of snow in each state. Even in the sunshine state of Florida they have snow. Hawaii, usually do have snow on the high mountain on the Big Island “Hawaii” does not have snow. Dallas hit a record of 12.5 inches of snow. Most snow in a 24 hr. period since 1978. The power was out at my grocery store, could not by frozen food, dairy products or and meat products. I said, you have plenty of snow outside, could you not use the snow to pack it in? I will stay warm and watch the opening of the olympics.

  59. Bev, You are always welcome here.

  60. Shooting a wedding reception today….with a camera. Did you all watch the Olympics opening? I wonder if there been any Olympics athelics with NF or in their families?

  61. Sorry, Bev, I meant all black women but you.

  62. Damn right.

  63. Hi everybody
    looks like a few snowflakes drifted from Washington to Germany. They closed some highways already. Here in Munich the streets look like ski trails. But with all the snow the Nymphenburg Castle looks very romantic. You can watch ice skaters on the canal and you can borrow skates if you want to join them.
    I hope the weather conditions in Washington will be better until the 17th

  64. Thank you Gaby, I hope the weather will be a lot better by the 17th. Today the weather is nice here.

  65. I remember living in Germany, when it snowed, it was pretty. Very pictureistic like in Nurnberg (for give spelling), Garmish and some of the German towns, churches and castles. Actually…all of Germany.

  66. Hi JohnP
    When I was a 2cnd grader, we lived in Nürnberg. I grew up in a town close to it- so we went there on the weekends pretty often. Now that I live in Munich its not too far for me to go to Garmisch. Sometimes I go there with friends of mine for a hiking tour.
    You might have been to Neuschwanstein too- you feel like walking through a film-studio for a historical movie.
    But for the time being I have seen enough snow. I am looking forward to spring- and to the St. Patrick´s Day Parade. I hope I can wear my Just-Ask-Shirt….

  67. I remember being to that castle, I just could not spell it earlier. When I was living in Germany, it was before the American tourist started to come to Europe (1960-62). Walt Disney got is idea for his castle from Neuschwanstein.

  68. Just want to give a quick update, on DC. Just heard for the Texas NF Foundation that we are still on for DC this week. Looking forward to it.

  69. Have a safe trip. Hope all goes well and the snow will hold off or no more snow while you are there.

  70. Thank you John. I hope the snow holds off as well. I’ll post about the trip.

  71. Dont send us any snow job from DC……lol

  72. Hey John and Gaby, I had forgotten about Garmisch-Partenkirchen (OK, i admit, I googled it to get the spelling). When I was stationed in Germany in the early ’70s there was an Armed Forces Recreation Center there. It was an amazing place to go ski and hike and I took advantage of it frequently for R&R from the Army.

    Speaking of the Army, Reggie go get some DoD dough for NF research!
    Have a great trip.

  73. When we went to Garmish, we would often stay at Lake Eibsee (usure of spelling), at a hotel, not sure if it was for the military or not. It was really neat. Well, I think that was the name of it. It was real close to a rail station to get on a train or tram to go skiing. I love riding the trains in Germany, they were fun. If my parents had known what I have done, anyway I would catch a train and ride to a town or two down the line, get off, and get the returning train. I was like 11-12 years of age.

  74. Ha! Good thing you didn’t hop on the Express to Amsterdam.

    You could set your watch by the trains in Germany.

    Gaby, you are lucky to have such a good train system. Where I live in Texas the only trains we have are used to haul cattle!

  75. I do ride the Trinity River Express to Dallas and Ft. Worth, but thats nothing to compare the rails in Europe.

  76. Hi everybody…
    Reggie- when is your plane taking off to D.C.?

  77. Hi Bart, you should better not set your watch by the trains in Germany.
    Sometimes the trains are so crowded that I feel like beeing on a cattle wagon!
    But starting from munich there are many nice places to go by suburban or local trains for a day trip. The Starnberger See, Ammersee, Tegernsee… good for hiking, swimming or a ride on a boat- depending on the season.

  78. Gaby, I leave Wednesday afternoon. Wish us luck.

  79. Best of luck in the Capital City.

  80. Knock-Knock!
    Reggie, you there?

  81. Do not know how long he is going to be in the Capital City, have not heard any news break from Washington, no party crashes at the white house.

  82. Hey Gaby, just saw a skier named Riesch from Garmist is in Silver for the womens downhill at Vancouver. Cool!

  83. Hi Bart,
    I just heard in the news that Maria Riesch got another medal: Gold for slalom- great!
    The 4th gold medal for Germany 🙂
    Have you heard from Reggie lately? Any vital signs? I suppose he is very busy…


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