neurofibromatosis cafe

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

My new Friend, Ed Port, needs your help.

11212008-wdl-port-dFrom: 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 Continue reading

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December 27, 2008 Posted by | Awareness, Benefit, Friends, Medical Resources, neurofibromatosis, NF1 | , , , , , | 67 Comments

Reggie and the Neville Brothers

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!”

April 27, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis, NF1 | , , , , , , , , | 106 Comments

Clay Walker at the Houston Livestock Show and Rodeo, 3/14/08

2334667510_e3fa1648da_b.jpgWow! Tonight I was invited to the Rodeo once again. It was a more then Terrific night. The music was the best I’ve heard so far. Clay Walker sang all of my favorite songs and encouraged everyone to join in. Pretty cool. It was cool to see him ride a horse to the stage. A real Texan.2334669090_750680bb56_b.jpg

A big thank you to Laurie Selzer, from MNI (Media Networks Inc) for allowing me to join them in the Verizon West VIP suite. The food was terrific. I wish I knew everyones name I would love to say thank you for the wonderful treatment.

Here are a bunch of photos I took tonight. I hope to add everyone’s names to these when Lou gets them from Laurie!

March 15, 2008 Posted by | Friends, Friends of NF, Fun, houston livestock show and rodeo, Just Ask!, Laurie Selzer-MNI, neurofibromatosis, Photos, RODEO | , , , | 115 Comments

Rodeo Night With Martina McBride

2319566597_7713960437_o.jpgTonight was another great night at the Houston Livestock Show and Rodeo!

I started out with the live stock show and all of the other fun things. Oh, my God! Did I enjoy the FOOD. Everything was to die for. Deep fried Oreos, steak burgers, foot-long sausage sandwiches, giant cinnamon rolls with lots of icing. But don’t take my word for it, check out the photos for yourself.

Click here to see photos from today!

I went to the Rodeo to see Martina McBride. She was great and the music was terrific! She really sang her heart out. She sang all of her best songs and the crowd loved it. Of course, so did I. Martina loves Houston and she looks forward to her show here every year.

I know why she loves Houston. I feel it every time I go out. So many 2319607191_9a1724b37f_o.jpgpeople here have been so kind to me. I’m thankful to be in a great city like Houston. It made me feel so good when people I never met came up to be today and spoke kind words to me. You will see them in my photos. People like that are heroes to me!

March 9, 2008 Posted by | Appearances, Astros Game, Awareness, Friends, houston livestock show and rodeo, Just Ask!, Martina McBride, Music, neurofibromatosis, nf, NF1, NF2, Photos | , , , , , , | 127 Comments

Kay has neurofibromatosis (Video)

Meet Kay. She has neurofibromatosis.Meet Kay from the U.K. (full interview)

WellChild meets a young girl called Kay, who has a condition called neurofibromatosis otherwise known as NF1.

Children’s health videos from WellChild. Information, advise and stories about children from the UK children’s charity. Registered charity number 289600.

WellChild produces a range of videos spanning children’s health. WellChild is the single point of reference for all children’s health, for children and families.

May 27, 2007 Posted by | Awareness, neurofibromatosis | , , , , | 2 Comments

An excerpt from NeuroTalk Support for people with neurological disorders and diseases

“Hi, My name is Camrin, at 15 years of age I was diagnosed with neurofibromatosis type 1. Neurofibromatosis is small tumors on your head or other areas of the body. Some of the symptoms might be brown spots throughout your entire body similar to birth marks. After the doctor diagnosed me with that I also had anxiety problems. I was than put on medicine called paxil. The teachers new that I was on it and they used to ask me if I took it or not. Sometimes, I would say yes and other times I would say no. I didnt like being on anxiety medicine because it made me feel so stupid.” white_lilies2445

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May 19, 2007 Posted by | Help, neurofibromatosis | , , , , , | 1 Comment