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

A few months back, you may remember the blog asking for your vote so that I could be one of the speakers at  SXSW.  Well, your vote worked because I will be one of the speakers this weekend.  Lou and I head out to Austin Saturday to check in and scope out the place.  Then, on Sunday around noon, I will share with the panel how I utilized the internet via my website, blog, and Flickr, YouTube and other resources on the internet to spread awareness of neurofibromatosis. It would be great to see you there.  All the information you need, if you would like to attend, is here. Look forward to seeing you. If you live in Austin, definitely send me a message!

By the way, I did NOT write the title of the panel!

The Group made it to Washington, DC last week which was a task in itself with  the winter storm hitting the east cost.  The storm was gone, but there was still a lot of snow.  Living in Houston, all my life. I have never seen that amount of snow in one place. Most of it was cleared away. It was enjoyable though.

The Neurofibromatosis Coalition team made all of the meetings. I believe all of the meetings went well. The amount requested  is $25 million. The same amount requested last year.  We were shaved down to 13 million.  The Department of Defense (DOD) could have easily awarded more funding for studies, if the funding was awarded.   The good news is there are studies that are waiting in line that could help.  Write your local and State Representatives and let them know how important funding is…it will save lives for millions of Americans by finding a cure for all types of cancer.

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

Neurofibromatosis can cause variety of effects. Skin disfigurement only one symptom of congenital disorder

Published Wednesday December 2nd, 2009

By Sheryl Ubelacker
THE CANADIAN PRESS

TORONTO – Bob Bingham settles back in his leather easy chair and agrees he’s a man who’s comfortable in his own skin.

Enlarge Photo

The Canadian Press

Reggie Bibbs, 45, of Houston has a severe form of neurofibromatosis. Through his ‘Just Ask’ campaign and his website (www.reggiebibbs.com), he uses his disfigured appearance to raise awareness of the congenital disorder.

That might come as a surprise to some, for the topography of Bingham’s skin is anything but smooth. He has hundreds of lumps and bumps ranging over his body, from a smattering on his face and neck, to tightly packed clusters on his chest and back.

Benign tumours that form in the sheath surrounding nerve tissue, they are but one possible manifestation of a little-known genetic condition called neurofibromatosis, or NF.

“If I was walking down the street, you wouldn’t notice it,” says Bingham, 72, of Toronto. “But some of our people, their faces are very badly marked, like you would see them coming from several blocks away.” (more…)

PHOTOS

William, John AuCoin and I went to the Alabama Ice House last night to listen to the Flaming Hellcats. William had his Just Ask! hat on and I had my Just Ask! tshirt on when all of a sudden, I thought I heard someone say, “Ask you about what?” When I turned around I saw this young woman who seemed quite interested in me, or, more importantly my tshirt.

I told her the story about Reggie and how he had this idea to print tshirts so people would feel comfortable coming up to him and asking about his disorder and the fact that we had an actual 501c3 designation for the Just Ask! Foundation. (more…)

Reggie is the one on the right.

PHOTOS

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…)

Lou’s vacation photos from Houston to New Orleans to Memphis TN to Nashville TN to Cincinatti OH to Youngstown OH to Franklin PA to Cleveland OH to Knoxville TB to Tuscaloosa Alabama to New Orleans to Houston

From: Ed Port <gbg@ameritech.net>
Date: December 27, 2008 2:56:15 AM CST
To: reggie@reggiebibbs.com
Subject: Hello Reggie from Ed Port
Reply-To: gbg@ameritech.net

Thank you for the e-mail MIke forward it to me. How did yo hear about my story?  I fist saw you on the O about a year ago when I was flipping thou the TV chs   Mike has been trying to help me get my story out.  I ws chatting with friend today on yahoo that lives in  Romania who said he would put my website on his blog to help to get the word out and to help rasie funds.

I would like your imput on anything that would help make the website better.  I wike your store very much it would great to speak to you

http://www.edneedsamiracle.com/

Ed Port

Youngstown Ohio (more…)