Neurofibromatosis Cafe A place to talk, have fun and share.

PHOTOS

Tonight was very special as the Discovery Channel was in town filming a documentary about Reggie. Thanks to our dear friends at Saltgrass Steak House, the Psych Ward Sirens and all of our friends at the Houston Roller Derby, for making this an evening Reggie will never forget!

Toni Niece, of Saltgrass Steak House, gave us permission to shoot some interviews at their restaurant on I-10 @ Campbell Road. Thank you, Toni, the restaurant was perfect, the food excellent and the staff incredible! Our waiter, Chris, was outstanding and took wonderful care of us. Also, thank you for the delicious appetizers! That was completely unnecessary but totally appreciated!

Saltgrass Steak House Rocks!

More photos right here

What a great night at the Roller Derby. Please meet my new friends in the photos above. The friends above made the night special f. I don’t remember the little girls name in the photo. She was specially nice, and caring. Seem to be concern about me. I hope she knows that because of her and her Dad and friends I had a terrific night. Thank you for asking about nf, and for taking a photo with me.

Of course it is always fun watching all the roller derby action. All of the teams are good at what they do, Roller Derby, a good place for anyone to go, and get treated as if, you of you are the champs. All the teams treat the fans as if we are playing. Hats off to all of the HRD for treating the so special.

Lou and I went to the rodeo tonight and had an incredible night! The highlight of the evening happened rather early like within the first 15 minutes. Lou noticed a nice lady next to us with a baby and she looked like she needed to smile. So Lou started talking with her and before I know it, she’s asks me if I want to hold her baby. I was so honored and so proud and so appreciative of the unconditional trust that she had in me.

Michelle Hickman, you made my day today! Thank you so very much!

Lou took…like, over 120 photos so click below to see all of the new friends we made tonight. And, also, a special “Thank you!” to the soldiers from Fort Hood that were at the rodeo tonight. You are a credit to our nation!

I salute you!

PHOTOS

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 kbischoff@nfinc.org

OCT 16, 2009

HEY REGGIE HOW ARE THINGS GOING? I’M IN LONDON HEADING BACK HOME AND I FORGOT TO TELL YOU THAT IT IS MY HONOR TO WEAR MY DEAR FRIEND’S T SHIRT! I LOVE YA MAN BUT YOU NEED TO SEND ME ANOTHER T SHIRT TO SPREAD THE WORD ABOUT YOUR CAUSE CHAMP! ALL THE BEST! SUGAR RAY LEONARD

Guess who is wearing one of my JUST ASK! t-shirts?

You probably already know from the photo you see here. Yes my friend Sugar Ray Leonard. I was so happy when Ray ordered one of my t-shirts. He told me he would be proud to send me a picture of himself wearing my shirt. He kept his word and I have the pictures to prove it. I have known Ray for a long time and he is always supporting my in everything I have done. Imagine someone as famous as him supporting my efforts in NF awareness. He’ll always be the “Champ” in my eyes!

jptex: I said you are a pathologist….

Guest34: A pathologist of the speech kind haha

I wouldn’t work with dead people because its kind of hard to teach/evaluate their speech.

adgiant: Yea, they tend to mumble

jptex: You will love to come here and here us Texans talk

Guest34: Well I’m just here under guest

Is that so?

adgiant: Evere see 6th sense?

Guest34: Nah

adgiant: the kid saw dead people. I hear dead people. (more…)

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.

Reggie

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)

(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. (more…)

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!

Thank you,

Lou

Watch the interview that has all of Reggie’s blog talking as FOX News 26 interviews Reggie Bibbs. Damali Keith revisits Reggie to see how he has adjusted to life now that he has taken his disorder, neurofibromatosis, yo the public through his “Just Ask!” campaign.

There’s even an appearrance by Lou and some of his staff!

HERE’S THE INTERVIEW!!!

I hope this link works. if not, go to

http://www.myfoxhouston.com and search for Reggie Bibbs.

How can I begin to tell you how much fun I had yesterday at the International Festival. The day stated out very well with meeting people who have seen me before. There where happy to take photos with me. I was remembered from last year. The food was terrific music was great. All types of music. I enjoyed the country music of course.

The best part of the evening was music from the Neville Brothers. Arron Neville. I actually got to meet the Neville brothers. A very big thank you to the Neville brothers for taking time to meet and take photos with me. Also thanks to my friends who joined us, Matt Jones, “The Tall One” and William Hughes, “The Smart One.” I said man I would love to meet the Neville brothers. Matt said, “I bet I could make that happen.” Well, he did and you see the photos as proof. I have to tell all of you I had the best time ever.

SEE PHOTOS OF CONCERT AND BACKSTAGE

It would be a really good thing if we could get a group together and do what I have been doing for a year. I can promise you it will change how people feel about NF, and you will feel better that you did it. Whether you have nf1 or nf2, it is a great thing to let people get to know who we are. I would really like my friend, Brian, to go with me some time. I really think people are more understanding now. It seems to me that people expect me to be there. How cool is that?!! Next stop, the “Art Car Parade!”