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

Some friendsand and I went to see Kevin Nealon at the Improv last night. Click on the link, valt then photo. Check out the photos on his website, as well as the photos of my facebook, and flickr page.  I met Kevin a fews years ago in California, when visting my friend Scott. That is how I met Kevin. I’ve been friends with Kevin 3 years after that day. Kevin contact me to say he would be in Houston, and he would like for me to come see him. We did, and he really made me happy, as he did the same for my friends.

This is what Kevin did for me.  He wore my just ask shirt on stage. He gave me free tickets. He talk to me after the show, Was not in a rush to leave. He posed for photos with me. He collect lots of doodles for National Doodle Day.

Joan Rivers, Jane Leeves, Wendie Malick, Jon Lovitz, Valerie Bertinelli, Garry Shandling, Roseanne Barr, and of course Kevin Nealon.   And Kevin gave me this medallion. It was given to him by Brad Paisley. It reads Expect Great Things.  Kevin really made me happy, and Im thinkful for what he is doing for all of us that are affect by NF.

Disfigured man wins Jefferson Award

POSTED: Thursday, January 13, 2011

HOUSTON — A man who inspires others despite a lifetime of suffering from a condition without a cure is this month’s Jefferson Award winner.

WATCH IT: Man With Disfiguring Disease Inspires Others

Reggie Bibbs was born with a genetic disorder of the nervous system called neurofibromatosis, or NF.It causes tumors to form in the body. For Reggie, it disfigured his face.Reggie’s brother Ronnie also had it. The tumors took Ronnie’s life in 2006.But from tragedy, a purpose was born.”I want more people to understand about NF.  I want people to understand me, and I want to bring awareness,” Reggie said.The way to bring awareness on a large scale is on the Internet, so Reggie created a website, a Facebook page and a blog.Now, people with NF can virtually handhold each other about their trials and triumphs.

Reggie did not realize how far-reaching his message would be.”Canada, Australia, London,” he said.The message to those with NF is the same — get out. Get out of the house and give people a chance to get to know them.”I’m just like them.  I still have those fears and worries they have, and I let them know that even with those fears, they still have to do it,” he said.He said he knew there would be questions, so Reggie came up with T-shirts that say “Just Ask” and made some cards explaining the disorder.And he started taking pictures with people, even famous ones.”Aaron Neville and the Neville brothers when they were in town,” Reggie said.Words of encouragement flooded in. (more…)

A producer from a U.K. production company, Darlow Smithson, came to town today to begin shooting a documentary about neurofibromatosis. They will be taping Reggie for the next seven days in Houston and Salk Lake City, Utah, along with a fellow NF’er, Maurice. Today, they shot Reggie at home getting ready for his trip to Utah, i.e., ironing, packing, talking about the trip with his mother, Dorothy, and basically documenting a day in the life of Reggie, a guy with NF. PHOTOS

Recently, I shipped a Just Ask t-shirt to Gabriele, a new friend, who lives in Germany. I want to share her message,  But first I want to say, I am impressed that someone from as far as away as Germany took time to write such a nice message and also order a JUST ASK T-SHIRT.  Now!  that is a cool feeling.  Someone supporting what I do to bring awareness to nf.  Gabriele writes…..

“Hello Reggie, I´ve written you a note just a few minutes ago- but before I got the chance to finish it, I hit the “submit-button” by accident. To make shure you receive it all, I´ll start all over again. I´ ve seen a video with you and Oprah on you tube. I found it very touching and think you are very courageous. I was born with NF too and since the right side of my face was damaged I had operations since I was 3 years old. Now I am almost 45 and ´ve been leading a normal live. My parents gave me a lot of courage on my way- thats why NF couldn´t stop me from doing anything. I have to admit that there was no chance for me to become a model but I am a few inches to short anyway I wish there where more people like you- letting the public know that a face isn´t a vital organ. That people like us have a brain and a heart and   are liveable and loveable beings. One of my reasons to write you was that I wanted to order a “Just Ask” T-shirt. In the meantime I´ve found the link on your homepage. The other reason was that I wanted to tell you “Keep going” … well- there is still so much I would like to say, but I better write a book… A book? Why not…. I hope you had a nice x-mas and want to wish you a happy new year Gaby, from Munich Germany