neurofibromatosis cafe

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

NEW FRIEND MESSAGE FROM A MOTHER WITH HOPE

2007-002.jpgHello Reggie,

My name is Eleanor and my daughter was just diagnosed with NF. We noticed her beautiful little “birthmarks” when she was born and her daddy took such pride because his little girl had the same marks as he did in almost the exact places.

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She later developed freckles on her armpits and I would tease her that the freckle fairy must have slipped off her nose and landed there instead dropping her bag full of freckles.

Just this week during a check up for a mole on my son, the dermatologist noticed the cafe au lait spots and turned his attention to my daughter. You can imagine my surprise. These were after all JUST freckles. Unfortunately, the doctor did not break the news very well. I was reeling.

It has been 4 days since we got the news and I have had every emotion imaginable. Every fear…how will she be treated? will people reject her?…how will she deal with it? Is this painful? no grandchildren? Continue reading

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July 30, 2007 Posted by | A MESSAGE FROM REGGIE, Appearances, Friends, Help, neurofibromatosis | 164 Comments

Houston Roller Derby Stars at Tomball Event, Aug 3!

tomball.gifOne of the best sporting events in Houston, in my opinion, is the Houston Roller Derby at Verizon Theater. I have been at least three times, and all I have to say you must go if you haven’t been. If you think it’s all fake and everything is rehearsed, think again. These ladies are tough!!! And some of them are real mothers! (No joke intended.)

I have enjoyed every game. They really treat the fans like they are the stars. I’m building quite a collection of photos with a lot of the team members. I still haven’t taken photos of everyone yet. Luckily, all of the team members are very accessible before and after the matches to talk, sign autographs, take photos and hang with audience members.

Hope to see you at one of the bouts. I know I will be attending as many bouts as possible.

Their next match isn’t until the third Sunday in August at the Verizon Theater downtown but many Houston Roller Derby members will be at the 35th Annual Tomball Night
Celebration
in Tomball!

This would be a great opportunity to come meet and talk with your favorite Houston Roller Derby stars! I’m hoping to get a complete list of all planning to attend so as soon as I get that, I’ll post it here!

Here’s all the important details:

Date: Friday, August 3rd
Time: 5pm – ??
Cost: FREE- so come hang out!
Where: Bob’s Wild West
Address: 400 W. Main, Tomball
Directions: Take 249 North, turn Right on Main
Fun, Food, Music, Prizes, and Fireworks!

See ya’ll there!

July 28, 2007 Posted by | Friend, Fun, Houston Roller Derby, neurofibromatosis, News | 8 Comments

“Uncle John” Turner Dies

FOR IMMEDIATE RELEASE
Contact: Mark Murray
ph: (512) 587-6833
email: mmurray@kvue.com

“Uncle John” Turner
August 20, 1944 – July 26, 2007

Legendary Texas Blues Drummer Dies at 62

B.B King once exclaimed, “Man, I can set my watch to your time!”


Legendary Texas blues drummer “Uncle John” Turner died Thursday, July 26th, in Austin, Texas from complications related to hepatitis C. He was 62 years old.

Born in Port Arthur, Texas, Uncle John was a childhood friend and bandmate of legendary southeast Texas blues and rock guitarist, Johnny Winter. While playing drums with Winter in 1968, Turner convinced him to try a full-blown blues band format and sent for his friend Tommy Shannon to play bass. Success quickly followed, and the trio went on to record what many consider to be three of Johnny Winter’s finest albums: “The Progressive Blues Experiment,” “Johnny Winter,” and “Second Winter.” With fourth member Edgar Winter, they played Woodstock in 1969, as well as numerous other festivals and shows around the world. Continue reading

July 26, 2007 Posted by | Friend, Fundraising, Music, neurofibromatosis, News | 1 Comment

Uncle John Turner Benefit at Dan Electro’s Guitar Bar

Jerry LaCroixLou and I went to the Uncle John Turner Benefit at Dan Electro’s Guitar Bar today and had a blast! Uncle John Turner is a pretty famous drummer who is in dire need of a liver transplant. Uncle John has played and jammed with some really cool dudes like Johhny Winter, B. B. King, Jimi Hendrix, Freddie King, Muddy Waters, Junior Wells, Lightnin’ Hopkins, Johnny Copeland, Albert Collins, James Montgomery, Paul Nelson. and many more.

Yesterday afternoon was my first Blues concert! I got to hear some terrific music with Lou. I thought, this would be the perfect chance to reach more people, and tell them about NEUROFIBROMATOSIS. I said sure. Oh wow! I’m happy I went. I met so many nice people who treated me just as I want to be treated. No one stared, No one laughed, Only one seemed uncomfortable setting next to me. I met a lot of people, who I would never have met if I had not gone to the concert. The music was great. What a great benefit! I was proud to be there to help support the cause.

Some of the performers who donated their time and talent include Sonny Boy Terry with Little Ray Ybarra, Paul Orta, Texas Johnny Brown, Hightailers w/Little Screaming Kenny, Jerry LaCroix, Ezra Charles, Michael Milligan & the Altar Boyz, Rehabiliteens w/TC Cannon, Allison Fisher Orch w/Teri Greene, Erin Jaimes, Eric Tessmer and Gary Clark Jr. EMCEE was KPFT 90.1 FM’s Blueshound

Click here to see photos from the benefit and help me identify some of the performers! More info: www.uncathon.com

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Continue reading

July 23, 2007 Posted by | Benefit, Friends, Fundraising, neurofibromatosis | 4 Comments

Houston Roller Derby Queens – Mistilla the Killa and DeMentia!!!

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I don’t want to show any favoritism or anything but I really, really enjoy Mistilla the Killa and DeMentia! Mistilla says in her blog to “tell somebody how beautiful they are” and that’s what I’m saying here. Mistilla and DeMentia are beautiful inside and out! And they made me feel great by being so nice.

It is easy to see that they are totally into the entire roller derby experience and really enjoy themselves. I love their attitude and I love the photos they took with me.

824932426_235010efc8_m1.jpgLou took this photo of Mistilla as the second half was about to begin. M.T.K. was stretching and getting ready to kick butt! I love the caption that Lou wrote for the photo, “Let me in, Coach! I promise I won’t kill anybody this time!!”

I want to invite everyone who comes to this blog to come to the next Houston Roller Derby event. Tickets are dirt cheap and the event lasts a long time. $15 at the door. Doors open at 5pm. Matches start at 6pm. The next match is on Sunday, August 19 at the Verizon Theater downtown!

Please come and I promise you’ll have a great time!!!

In the mean time, here are some blogs to go to so you’ll know some of the players before you get there!!!

Mistilla the Killa
Dementia
Carmen Geddit
Beverly Kills
Mary Choppins
Ellie McFierce
Private Beenjammin

July 19, 2007 Posted by | Houston Roller Derby, neurofibromatosis | 8 Comments

ANOTHER ROLLER DERBY NIGHT IN HOUSTON

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My friends Lou and Rie and I enjoyed a evening of fun, skating and great entertainment Sunday.

Yes, it was the third Sunday of the month…Roller Derby Night!!!

I just have the best time ever every time I go. All of the teams are TERRIFIC and treat their fans really nice. They are always willing to take a photo and sign autographs for fans. And put up with Lou!!!824056727_9b5cf674d11.jpg

I hope more will learn about the Roller Derby ladies here. Maybe I will see some of you next month. I do intend to be at the next one. Be sure to look for me. ‘ll be the one with the big smile!

Mistilla the Killa, DeMENticia, Carmen Geddit, Crasher and Fro-Rocious rule!

July 16, 2007 Posted by | A MESSAGE FROM REGGIE, Favorite Places, Friends, Just Ask!, neurofibromatosis | 22 Comments

Breakfast with Greg Gorman

greg.jpgYesterday I received a call from my friend Greg Gorman, the world-famous photographer from Los Angeles.Wow!

Greg asked if we could meet for breakfast this morning. I can’t believe someone as famous as Greg Gorman would take time from traveling to have breakfast with me.regchar.jpg

It’s been 10 years at least since we’ve had a chance to visit in person.

Greg, Carl and I had a terrific visit as well as the most important meal of the day. Breakfast. Thank you Greg and Carl for your time today

July 12, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Awareness, Friends, Fun, neurofibromatosis, News | 15 Comments

THE T-SHIRTS ARE HERE!!! THE T-SHIRTS ARE HERE!!!

shirtsale1.jpgHere are two of my nieces, who you have seen before. They are helping me get the word out that our new shipment of JUST ASK t-shirts just arrived! FINALLY!!! I know many of you have been waiting patiently since we ran out last month and I really, really appreciate it.

To order, click here!

ALL sizes are now available to anyone that would like to order. S, M, L, XL, 2XL AND 3XL!!! They make terrific birthday, Christmas and wedding presents! And nothing says “I Love You!” more than a “Just Ask!” t-shirt on Valentine’s Day!!! Continue reading

July 12, 2007 Posted by | A MESSAGE FROM REGGIE, Awareness, Friends, Fun, Just Ask!, neurofibromatosis, T-shirt, Texas NF Foundation | 4 Comments

SHORTS IN HOUSTON PART 2 – I DID IT!!!

washcar.jpgHello my friends hello. Hum. That was in a song wasn’t it? I loved the song. Yesterday was the best day in a very long time with views on this topic. I’m very happy with the comments and support from all of you. Yes you have encouraged me to Just do it!

 

Well it’s a start and I have pictures to prove it.washcar2.jpg

You are a part of this success. Lets keep the stats up. Let me know what you think about the photos. You will see me out and about in shorts around Houston. I have to remember We have a lot of great people here in Houston, have supported me many times before.

July 10, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Awareness, Friends, Fun, neurofibromatosis | 14 Comments

SHORTS IN HOUSTON

reggieshorts31.jpgI have a new tripod, so I took this photo of myself working at my computer. I know it looks like I posing for the photo. Well, you’re right. I’m wearing shorts around the house. I wish I had the guts to go someplace wearing shorts.

People always ask for my advice and how do I handle things. Now I ask you, do you have advice me for?

I’m not that strong, but any encouragement or advice you can give me, I’m all ears or leg. : > ) You know living in Houston, you have to wear shorts in order to keep cool.

July 9, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Awareness, neurofibromatosis, News | 15 Comments

My specialty: German Chocolate Cake!!!

GERMAN CHOCOLATE CAKEMORE DESSERTS HERE! PLUS, NEW CAMP PHOTOS!!!!

http://www.flickr.com/photos/reggiebibbs

I wante to post the cake I baked yesterday.  I didn’t go the fireworks because of the weather. It wasn’t very pretty.  It will be other times I get out and meet the great people here in our city. I hope you are enjoying my hobbies. COOKING and BAKING sweets. It’s hard to beleive I wear a 32 inch waist? lol. I wish. I don’t remember  when I use to ware that size. Oh well, I’m enjoying the food, and that is all that matters to me.

July 4, 2007 Posted by | DESSERTS, neurofibromatosis | 10 Comments

FORTH WORTH MAYOR MIKE MONCRIEF

376702630_0e7ac2eb0e_o.jpgI received a wonderful letter from my friend from years back. At the time I met Mike Moncrief, he was Senator Mike Moncrief for the State of Texas. And now he is Mayor Mike Moncrief of Fort Worth. He and his wife Rosie have been very supportive in everything I have been involved in. You will see that in the photos in my picture section on Flickr. Mike and Rosie also wear one of my JUST ASK t-shirts. I’m honored to call them my friends!

Here is the email that he sent me today:

Mike & Rosie Moncrief, Mayor and Mrs. Mayor of Fort Worth

“Hey Reggie, I just visited your website and i was most impressed. The ongoing
challenge of raising awareness of NF and search for a cure is made easier by your efforts. By the way, I wear my Tshirt every chance I get and have had numerous folk come up to me and ask about it. Keep up the great work and you are more than welcome to post this email on your blog.

Your Bud,
Mayor Mike

July 1, 2007 Posted by | Appearances, Awareness, Friend, Friends, Fun, Fundraising, Help, Just Ask!, neurofibromatosis, News, nf, NF1, Photos, T-shirt | 4 Comments