neurofibromatosis cafe

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

Cathy Clark, Brandon, the Astros, McKee St Bridge and the Porch Swing Pub!!!

2371941305_07b85111b7.jpgAnother amazing day out at Minute Maid Park! Lou and I went to the Astros game today. We had a great time. The game was great and the Astros won! It was really nice to see so many nice people. Like Brandon, who saw me on TV2371932691_f9d3cf8d99.jpg and came up to introduce himself. Thank you for doing that!

I saw Cathy Clark, who was my bus driver when I was in school. Lets just say it was over 25 years ago when I used to ride the bus to school.

Cathy remembered me by name. I was so happy when she told me she use to drive me to school. Cathy works at the concession stand in Section 409 of Minute Maid and, I got to tell you, I’ve never been treated with more love and respect than from that entire food area!

2372768826_593ba917eb.jpgI think Cathy is a supervisor or some other type of important person because she was definitely in charge! What a great representative for the Houston Astros staff. Cathy, you made me feel so special and it means the world to me! Hope both you and Brandon will be a regular on my blog. Thank you both for making my day!

After the game, Lou and I went to the fabulous McKee Street Bridge and took some photos. WOW!!! 2372801080_fa310a4cba.jpgWhat a beautiful bridge and park! Lou’s friend, Kirk Farris, had single-handedly transformed this bridge and bayou area into a place that is totally cool, beautiful and peaceful! It’s just a few blocks north of Minute Maid Park on McKee Street just south of I-10.

2372900182_24194a87771.jpgOf course, taking all those photos at Minute Maid and McKee Street made us pretty hungry and thirsty so we went to the new Porch Swing Pub at Washington and Waugh in The Heights for crawfish!!! Man, oh, man, were they good! Lou had beer. I had Coke.

It was a beautiful day!

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March 29, 2008 Posted by | Awareness, Friends, Fun, houston astros, Just Ask!, McKee Street Bridge, Porch Swing Pub | , , , | 220 Comments

NEUROFIBROMATOSIS AD TO RUN IN TIME, NEWSWEEK and U.S. NEWS AND WORLD REPORT!

2357623769_f10072ed37_b.jpgMay is National Neurofibromatosis Awareness Month!newsmaglogos.gif2334669090_750680bb56_b2.jpg

Thanks to Laurie Selzer and my friends at MNI (Media Networks Inc – a division of TIME, Inc.), we will have a full page ad in the May Houston home edition of Time, Newsweek and US News & World Report magazines to help promote National Neurofibromatosis Month!

STANANDLOU Advertising was nice enough to prepare the attached ad that you see here inviting people to “JUST ASK!” about neurofibromatosis.

CLICK HERE TO DOWNLOAD A HI-RESOLUTION COPY OF AD

March 24, 2008 Posted by | neurofibromatosis | 137 Comments

Celebrities, artists, designers and friends in middle of doodling frenzy for neurofibromatosis!!!

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g-reggie-bibbs.jpgLou and I are in the middle of what I thought would be a very difficult task: asking celebrities, artists and friends to draw a doodle for National Doodle Day benefiting NF!

Well, I’m happy to say it was very easy thanks to some very special friends! With the help of some special people who want a cure for NF as much as I do, friends from all over the country whipped out their writing instruments and doodled for NF. Some of them you may know like Sugar Ray Leonard. (SEE DOODLE ABOVE LEFT)

Somee-lou-congelio-_1.jpg are friends of my friend, Lou. A big thank you to Lou and all of you who played anf.jpg big part in this effort to Knock Out NF Once and for all. Take time to see all the doodles on my photo page and go the National NF Doodle Day website!

All doodles will be posted shortly onto ebay where you will be able to bid on your favorite NF doodle!!!

Bid high, soon and often and do your part to help raise money for NF.

Doodlers include Sugar Ray Leonard; designer Andy Dearwater; artist/gallery owner Dan Allison, stamp art artist Kim White; printmaking professor Peter Massing, illustrator Matt Loftiss; America’s Greatest Artists, The Art Guys; writers Lou Congelio and Matt Walsh; Lou’s daughter, Elena Congelio; yours truly, Reggie Bibbs; STANANDLOU’s Kate Wiggins and Rhea Diaz; and my nephew, Jordan Walker.

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March 17, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis, nf | , , , , , , , | 152 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

Baylor College of Medicine monthly genetic series to focus on neurofibromatosis at Health Museum of Houston

logo.gifHOUSTON — (March 4, 2008) — A discussion on neurofibromatosis, a genetic disorder that causes tumors to grow on nerve tissue, producing skin and bone abnormalities, will be presented in a public forum March 25 at The Health Museum of Houston.Neurofibromatosis is one of the most common genetic disorders, occurring in approximately one in 3,000 births.

The forum will feature genetic expert Dr. Maria Blazo, assistant professor of family and community medicine and molecular and human genetics at Baylor College of Medicine in Houston. The parents of a child with neurofibromatosis are also scheduled to speak.

Organized by BCM and Texas Children’s Hospital, the event is part of a monthly “Evening with Genetics” lecture series organized by BCM’s Department of Molecular and Human Genetics. The series offers current information regarding care, education and research about genetic disorders.

The program is free and open to the public. It will be held at 7 p.m. at The Health Museum of Houston, 1515 Hermann Drive. For more information or to register, contact Susan Fernbach at 832-822-4182 or fernbach@bcm.edu

March 11, 2008 Posted by | Awareness, Medical, Medical Resources, neurofibromatosis, Research | 49 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

National Doodle Day Benefiting Neurofibromatosis

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I spoke with Mari Garcia administrator of Gillian Anderson’s Official Web Site, I was asked sometime ago to help out and to contribute a doodle for NF, Inc’s Second National Doodle Day Auction. I was happy to post a blog and do what I can to be of help. Please check out the links and see your favorite Actors and actress and others who have support the fight against NF.

The auction will start on May 8 on eBay. So far there are two pages and more doodles will be added as they come in. Be sure and blog your favorite doodle.

NF, Inc. is raising money for neurofibromatosis through their annual National Doodle Day! As part of NF Awareness month, celebrity doodles will be available for auction on eBay.

These doodles have a very important aim: the funds they raise will benefit NF, Inc., an organization dedicated to providing support to individuals and families affected by neurofibromatosis (NF).doodle.jpg

Neurofibromatosis is a genetic disorder that affects one in every 2,500 births. NF is more common than Cystic Fibrosis, Muscular Dystrophy and Huntington’s Disease combined. Funds raised from the Doodle Day auction will go to support education, advocacy, coalitions, and research for treatments and a cure.

To learn more about NF, please visit http://www.nfinc.org.
For more information about National Doodle Day, contact email doodleday@nfinc.org

View celebrity doodles

March 6, 2008 Posted by | Appearances, Awareness, Benefit, Celebrity, CTF.ORG, Facebook, Friends, Friends of NF, Houston Texans, national doodle day, NF1, NF2 | , , , | 62 Comments

What a great day at the Houston Livestock Show and Rodeo Barbeque Cook-Off!

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OMG That was a blast last night. I Love CLEAR CHANNEL. The Best Team, and treated me very well. Thank you Rusty and the rest if you. I will never forget you. Cool seeing you There Dr. Marshall It’s too late to write a post but you can check out the photos from today at Flickr!

March 2, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Community, Friends, neurofibromatosis, RODEO | , , , , | 218 Comments

May is National Neurofibromatosis Awareness Month

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March 1, 2008 Posted by | Awareness, CTF.ORG, Friends with NF, http://www.ctf.org, Laurie Selzer-MNI, neurofibromatosis | 1 Comment