neurofibromatosis cafe

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

Reggie’s Ad in This Week’s TIME Magazine

This ad is the one that ran!                                   We decided to run this ad later.

Reggie felt that maybe people might be shocked by his actual photo in the ad so he requested that we change the ad to the visual on his shirt. What do you think? If you were a reader of TIME magazine and turned the page to see a visual of a man with a disfigurement, would you be repulsed or filled with compassion? Be honest.

April 29, 2008 Posted by | neurofibromatosis | 148 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.


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

Reggie, I need your help!

I have watched with admiration what you are doing for NF, with your website promoting awareness. Our 8-year-old daughter Victoria has one of the more severe cases of NF1, although you wouldn’t know it by looking at her.

She was diagnosed with NF1 at 9 months when our APRN noticed the Café-au-Lait spots. By 2 years of age, Victoria was complaining of headaches and was soon diagnosed with a tumor between her optic nerve and hypothalamus.
Victoria currently has learning disabilities, vision problems, and attention problems and with the development of a second growing tumor in her basal ganglia she is now experiencing almost daily debilitating headaches and psychological and social problems. We pray every day that the tumors will become stable and that she will not suffer any more symptoms.

Despite all of this Victoria is a vivacious, fun and independent little girl who amazes everyone that knows her.
We have watched hopefully in the last year as new discoveries have been made about this terrible disease and even as a cure becomes a possibility…. but it looks like the funding is drying up!!

I recently received this petition to sign to continue funding for research, and sent to all my friends and family, I am proud to say most of the signatures there are our friends and family. But it’s not the 1000 signatures that the initiator is looking to bring attention to this. With your connections and website I wondered if you would be able to get more exposure and get the petition signed.

Hope to hear from you …. and once again … Thank you for all you do to bring understanding, you are an inspiring and amazing man!!

“The measure of a life, after all, is not it’s duration, but it’s donation”
Corrie Ten Boom

April 24, 2008 Posted by | neurofibromatosis | 55 Comments

Houston Highlights – WHAT A BLAST!!!

Reggie had to go get his MRI so I thought I’d post some photos from last night until Reggie had an opportunity to write the blog about Houston Highlight. I will say that special, special thanks go to corporate sponsor, Continental Airlines, Tom Koch, anchor at ABC 13, the Houston Roller Derby, Del Frisco’s Double Eagle Steak House, Sullivan’s Steakhouse, Joyce’s Ocean Grill, Chef John Salazar, and the Spritz Bar & Grill House. Great food! Great entertainment! Great cause! Great night!!!

April 23, 2008 Posted by | neurofibromatosis | , , , , , , , , , , , , , , | 41 Comments


The Texas Neurofibromatosis Foundation asked me to be part of the Houston Highlights fund raiser for neurofibromatosis. I was happy to be a part. As Host Chair, I ask that you join us on Tuesday, April 22nd, 2008 at the Hotel Derek 2525 West Loop South. There are tickets that can be purchased at the door. Please see the invite below with all the details!

Don’t miss the great silent and live auction! Continental Airlines has donated some really, really special tickets. Plus, original artwork, incredible Astros tickets, sports memoralbilia, and more!!!

Any NF patient with special medical or financial needs and would like to attend, please email me direct. I would love to see you there!



Tuesday, April 22, 2008
6:30–7:30 p.m. cocktails

7:30–10:30 p.m. party


Tom Koch, Anchor/Reporter from Channel 13

2525 West Loop South
Houston, TX 77027

This pre-party will be accompanied by live music, hors d’œuvres from some of Houston’s finest chefs and live and silent auctions. CALL 972.868.7943

Participating chefs create a four-course gourmet dinner for 10 at their restaurant.
Private dinning to be selected on amutual agreed date with chef between
April 2 – June 30, 2008. CALL 972.868.7943

Ishma Blackwell
Keller Williams

Steve Haug
Del Frisco’s Double Eagle Steakhouse

Reggie Bibbs

Elizabeth Bertrand

Tyrese Blackwell
Fielding Castle

2006-07 Houston Highlights Participating Restaurants:
17 • Arcodoro Ristorante Italiano • Bistro Moderne • Crapitto’s Cucina Italiana • Crostini
Carrabba’s • Indika • Joyce’s Seafood & Steaks • Kiran’s • Mockingbird Bistro • Noe Restaruant
Olivette • Ouisie’s Table • Picho • Ra Sushi • Rainbow Lodge • The Raven Grill • Sabor
Shade • Spencer’s for Steaks and Chops • Sullivan’s Steakhouse • Taste of Texas • The Capital Grille
The Courses at the Art Institute • Zula

Elizabeth Bertrand, Reggie Bibbs, Ishma Blackwell, Lou Congelio, Cindy Hahn, Aida Jerome, Susan Johnson
Katherine Jones, Carran Lane, Colleen Marchetti, Randi Stott

*Wine provided by Texas NF. Gratuity included. Restaurant assignments are based on sponsorship level, the date your payment is received and restaurant availability. Some restaurants may have other restrictions or specifications. Please contact our office for more information.

April 16, 2008 Posted by | neurofibromatosis | 171 Comments

Houston Roller Derby Sunday Was a Blast!!! April 13, 2008!

What a perfect way to start a new blog.

Sunday is going to start off a terrific week. It’s going to be Roller Derby night at Verizon Wireless downtown! I can’t wait to see my friends skating, jamming and entertaining all of the Houston Derby fans. It will be my first bout of the season. Unfortunately, I missed the last one as I didn’t know the season had begun.

I’m looking forward to getting a chance to see and talk with MISTILLA, CARMENGEDDIT, DEMENTIA, JEKYLL AND HEIDI, PRIVATE BEN JAMMIN, The Colonel and many more! All of the Teams are Terrific and treat their fans really well. I hope some of you can make it to some of the bouts. You will want to go again. Watch for photos Sunday night. Also check out the Houston Roller Derby website too!

This last photo to the right is Audiomind at the Art Car Parade last year!

April 12, 2008 Posted by | neurofibromatosis | 35 Comments

URGENT!!! NF NEEDS YOUR HELP!!!! Deadline: Wed, April 9!

Just received this from my friend, Dr. Moore, at MD Anderson. I’m writing my letter now! I hope you can too! Here are 2 links that will make it real easy for everyone to send a letter!

Or, scroll down to the bottom of this blog and you’ll find ready-made letters to key subcommittee members . All you have to do is replace Lou’s Name and Address with your own then FAX it to the number on the letter. It’s that easy! Continue reading

April 7, 2008 Posted by | neurofibromatosis, nf | , , , , , | 67 Comments

Congratulations, Emily!!!!

Hey everyone! Hope you all are doing well! I have a free minute while the baby naps so I just wanted to drop in and say hello. Also, we got a phone call a couple of days ago from the Ghost Hunters production team, they are considering using us in one of their episodes. We are still having problems with whatever is in our house so I will gladly be on tv if it means I get some help, lol.

I have some news about Elijah but I am going to update his website with that so make sure you read it!

I’ll get back when I can, I just cannot believe how busy its been around here! My husband is having surgery again next week also so I will be extra busy 😦

“Morty” is great, he really is growing like a weed! The outfit we brought him home from the hospital in

doesnt fit him anymore and its only been 5 weeks. Here are a couple of new pictures: (SEE ABOVE OR CLICK ON LINKS)

Unfortunately Elijah started one of his vomiting episodes this morning so he is at the ER right now getting fluids, but Bill just called and said he is already feeling much better so hopefully he wont be admitted and he will come home in a little while.

– Emily

April 4, 2008 Posted by | neurofibromatosis | | 77 Comments