neurofibromatosis cafe

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

WHO HAS NEUROFIBROMATOSIS ?

gb.jpeghr.jpegThis is interesting to me. I saw a PSA for neurofibromatosis, with Harold Ramis. Harold Ramis is a comedian who was in Ghostbusters. I would like to know, doese he have nf ? does a family member have nf ? Or did he feel the need to help with making people aware of neurofibromatosis. It’s great that someone as famous as he, has join in that battle against nf. If you have not seen the psa, click HERE.

March 31, 2007 Posted by | neurofibromatosis, Uncategorized | , , , , , , | 8 Comments

MY BROTHER RONNIE

Most of you may have heard me speak of my older brother Ronald. We call him Ronnie. Ronnie is the third son of mom and dad. I have other sisters and brothers, you will hear about them at some point. I want to tell you a little about Ronnie. Ronnie is another reason I started this site. My brother and I are the only males in the family with nf. Well its only one male now. My brother Ronnie went home to be with the Lord in September of last year. We miss him so very much. I have three brothers that do not have nf. Two sisters that have nf.

Ronnie is one other reason I wanted this site to happen. I want to creat awearness of the type of cancer that took my brother’s life. We know it was nf releated. My post today is to ask you to keep watching for my tribute to my brother RONALD BIBBS. You will see for yourself what a kind man he was. I’ am happy to call him my brother. I take joy in that. Let me know you thoughts, and what you would like to see. Ronnie’s tribute comming soon.

March 29, 2007 Posted by | neurofibromatosis, Ronnie | , , , , | 6 Comments

WHEN I WAS DIAGNOSED WITH NF

I wanted to post this message because of something that came to mind as I was reading one of the boards about how we found out about neurofibromatosis. It was 42 years ago. Not as much was known about nf as we know now. We where told about the shorter life expectancy of people with nf and that they do not live beyond a certain age; we know now that is not the case. That was how little was know about nf at the time. This is one of the reasons we must get as much information out about nf as we can. I would like to hear from you. How old where you, and what where you told, when you or a family member was diagnosed with neurofibromatosis?

March 28, 2007 Posted by | A MESSAGE FROM REGGIE, neurofibromatosis | , , | 8 Comments

PHOTOGRAPHING AROUND HOUSTON

Houstonians and anyone who has visit our city. I’am looking for great places for photographing. If you know of areas around Houston, post them.  I know we have many areas that would be terrific to photograph.  I have in mind are places for a  picnic, parks and areas that look nice in the spring. Please post.

March 27, 2007 Posted by | Photos | 2 Comments

BELT BUCKLE

beltbuckle1a.jpgbuckle2b.jpgWell we all know the Houston Live Stock Show and Rodeo has come to an end. But, as you know I am a fan of country music, and I still have my bling belt buckle. Yes I will still wear it with my JUST ASK -shirt. I have a picture of my belt buckle. Let’s have a guessing game just for fun. I would like to know how many will get this one right. Which belt buckle do you think I have? The beltbucket on the left or the right?

March 26, 2007 Posted by | RODEO | , , , | 2 Comments

THE 19TH ANNUAL GOODWILL GALA

goodwill.gifLast night was the 19th Annual Goodwill Gala. Mom and I was invited. Goodwill and I go back a long way. It was there I had my first job. NF has changed all of that. Many of the things I was able to do before, I can’t do anymore.

I learned a lot and saw a lot of old friends. I met a lot of new ones too! I hope Goodwill will continue the terrificreggiedorothygoodwill.jpg work they are doing for all of the great people that have jobs because of Goodwill. Maybe some here have worked for goodwill, and would like to share how thay have been helped like so many others employed By Goodwill.

March 25, 2007 Posted by | Friends | , , , | 4 Comments

BIKE RALLY

Making Cancer History Bicycle Team Rides Again

Members of Team Cheniere hit the road again to raise money for neurofibromatosis research at M. D. Anderson. The 2006 Race Across America, an annual cycling competition involving about 40 different teams, left San Diego, Calif, on June 13, 2006 and rode over 3,000 miles nonstop, day and night and arrived in Atlantic City, NJ.

Poto of Kirk Gentle and Chris Shaw

This year’s “Making Cancer History Team” consists of only two riders, Chris Shaw and Kirk Gentle (left). A support team included Leslie Christison, RN, head nurse of the Robin Bush child and adolescent Clinic, and M. D. Anderson photographer Shawn Green. In 2005, Team Cheniere raised over $100,000 to fund neurofibromatosis research programs at M. D Anderson. They hope to raise even more this year to benefit the Children’s Cancer Hospital.

One of our patients, Emily Parker, has been adopted as their “pedal partner,” a living inspiration for riders to keep going. Read Emily’s story at teammakingcancerhistory.org.

Read Team Cheniere’s “road journal” or make a donation on their website.

This Year the event will be this April. Date to be announced.

March 24, 2007 Posted by | neurofibromatosis, News | , , , , , , , , , , , , | 6 Comments

DOCTOR’S VISIT

I have been getting lots of wonderful encouraging messages from all you. Thank you. I went for my regular check up at MD ANDERSON in Houston Texas. You never know what will happen with this disorder. Everything seem to be ok, but there are things that I will have check out to make sure. A MRI was ordered and that will be soon. We want to make sure the problem with my back is not something releated to nf. No need to worry now. I’m sure it will be ok. Just thought someone would like to know. Lets keep the blogs alive. Keep checking. New things added often. Give me your ideas of what you want to see. I have a few surprises up my sleeve. You will have to tune in to find out. Thanks

March 23, 2007 Posted by | About Me, neurofibromatosis | , , | 7 Comments

MY TAKE FIRED OREO COOKIES

oreos.jpegWell, I said I would post how the fired oreo’s. It was my first time to fry oreo cookies. It taste like chicken. <g>

I was surprised. It didn’t look very pretty, but is sure did taste good. It was like fresh baked cookies out of the oven. If you like sweets as much as I do, you will enjoy fired oreo. I used the double stuff. A plate of the oreos mile and the remote control, then you go your self a content dude. Now that you know how I feel about it. Let me hear from you. I wonder how a deep fried sneakers bar would taste ?

March 23, 2007 Posted by | DESSERTS | , , , | 5 Comments

CORTEO CIRQUE DU SOLEIL

Yes, I did enjoy the show last night. Corteo, By Cirque Du Soleil. It was a wonderful show. If you a familiar with Cirque Du Soleil you will enjoy the show. Lots of funny parts and the music good. After you see the show I would be happy to hear what you think. Last night was was like a dress rehearsal. Tonight will be the first nigh. Hope to hear from all of you that will see the show.

March 22, 2007 Posted by | Uncategorized | , , , , | 2 Comments

CIRQUE DU SOLEIL

cirque-_logo.jpgCirque Du Soleil will be peformaning at the Sam Houston Race Tract. Amazing talaent group. I have tickets to opening night, which is tonight. I haven’t seen Corteo the show that’s in town now. I’am sure its going to be a nice one. If you know about Cirque Du Soleil, and plan to see the show, post it. I would love to hear fron you. Below is a intrduction on the show. I hope to have pictures posted from the show.

logo.gif

Corteo, which means “cortege” in Italian, is a joyous procession, a festive parade imagined by a clown.

intro_corteo.gifThe show brings together the passion of the actor with the grace and power of the acrobat to plunge the audience into a theatrical world of fun, comedy and spontaneity situated in a mysterious space between heaven and earth.

The clown pictures his own funeral taking place in a carnival atmosphere, watched over by quietly caring angels. Juxtaposing the large with the small, the ridiculous with the tragic and the magic of perfection with the charm of imperfection, the show highlights the strength and fragility of the clown, as well as his wisdom and kindness, to illustrate the portion of humanity that is within each of us. The music, by turns lyrical and playful, carries Corteo through a timeless celebration in which illusion teases reality.

March 21, 2007 Posted by | Friends | , , , , | 2 Comments

DEEP FRIED OREOS

oreos.jpegMost of you have heard me talk about the deep fried oreos. A friend told me they could get the oreos at the Relient Stadum burning the Live stock Show and Rodeo. I didn’t get to try them durning the Rodeo. Now that I have the recipe. I will fry a bag of cookie and post how they taste. The recipe is listed below. If you try it, post how you like it.

Deep-fried Oreos
1 cup buttermilk pancake mix
3/4 cup ice water
1 quart vegetable oil
14 Oreo cookies
Powdered sugar

Freeze cookies for three hours. In a heavy-gauge 3-quart saucepan heat oil to 350 degrees. While oil is heating, set up a cookie sheet with paper towels for draining. In a medium-sized mixing bowl stir water into buttermilk pancake mix until thoroughly combined. As soon as the batter is smooth, dip each cookie, one at a time, into batter and smooth batter, making a thin coat completely around the cookie. Place coated cookie carefully into hot oil. Repeat for each cookie. Fry on both sides, turning over once until golden brown.
Remove fried cookie from hot oil with metal tongs and drain on paper towels. Dust with powdered sugar.
Let cool slightly (about two minutes) before serving.
Note: Success depends on the batter, which insulates the Oreo from direct contact with the oil. If the battering of the cookie is done right, it will become a delicious, edible shell and protect the melted cookie.

March 20, 2007 Posted by | DESSERTS | , , , | 8 Comments

HAPPY TRAILS TO YOU UNTIL NEXT YEAR.

The Houston Live Stock Show and Rodeo has come to an end.

images2.jpegThis year was the 75 year anniversary.

This year was TERRIFIC! . I was luck enough to attend two events. I’ m thankful for that. I am looking forward to next year, just like all of you. How many of you went to the Rodeo this year.

champinsonice.jpg

 

WARNING: PLEASE DO NOT CONFUSE THE PHOTO TO THE RIGHT WITH ANYTHING HAVING TO DO WITH THE RODEO!!!

March 19, 2007 Posted by | RODEO | , , , | 7 Comments

I AM HOUSTON PROUD !

426321481_ec51e097a1_m.jpg426321725_e9d986ebb7_m.jpg426321525_eb177c16de_m.jpg426321553_3fbb5ade42_m.jpg426321610_e925c15afa_m1.jpg

Wow! I just have to say to Houston. I’am Houston Proud! I went to the Rodeo tonight. ZZ Top was the main attraction. What a blast. I had a wonderful time. I don’t mean to brag on our home town. but how can I not do so. We have wonderful people here. I never felt so a part as I did tonight. I just wanted to come home and cry. So many people came to me and JUST ASK! Some ask for autographs and photos to be taken with me. Can you imagian how that made me feel? I am thankful I was able to go to the Rodeo a second time. It was wonderful. Thank all of you who saw me at the rodeo. You made it a plesent time for me. HATS OFF TO HOUSTON 🙂

March 18, 2007 Posted by | RODEO | , , , , | 3 Comments

Elena Congelio and me

reggie-e-6.jpgHere’s a photo of me with my biggest fan!

Elena and her Dad Lou came by the house today to say hi. I was happy to see “E” wearing her Just Ask tshirt. I think it goes well with her orange tshirt underneath.

Elena how do you think the photo came out? I’m so happy I didn’t have to take one with your Dad. You’re much nicer!!!


March 18, 2007 Posted by | Friends | , , , | 4 Comments

DRIVE LIKE IN A RODEO.

Today was the best weather we had in almost a week.   Now, this doesn’t happen very ofter, I thought it would be nice to talk about.  You might wonder why this in in the Rodeo category.   The weather was so nice, I washed my car in the drive way.  I  hope it doesn’t change the nice  are having.

The Rodeo part comes in, like this. I was told I drive my Impala like I was riding in a Rodeo. Or in one on the Munster truck shows. I don’t drive that bad.  How can you drive like you are in a Rodeo?

March 17, 2007 Posted by | RODEO | 6 Comments

WHY NF NEEDS MORE EXPOSURE

I made a special category called a message from Reggie. In this section I like to write daily experiences.

Believe me, when I say this. I wasn’t hurt by it, and I will still to go to the gas station where this happened. I went to get gas, and I saw a lady that saw me on the news. She spoke to me very nice. She told me she was proud of me. She also told me she remembered me as a young child. She said keep up the good work.

When I went to pay for my gas, the attendant asked me, My god! did someone fight with you? I told him no, I was born with neurofibromatosis. He then said God bless you. I ‘m so sorry. He seemed very apologetic. He just seemed sorry. After I finished at the pump. I went back in and gave him my card and told him to go to my site. He thanked me and said he will visit. This is not an attack on the guy, or the station. I will go back. He was nice. It’s up to us to make sure nf is better known.

Now the point I’m making is that we must get more exposure via NET, TV News segments, and PSA’S. When people get a chance to see and hear about nf, it will not be something new to them. This is why I’am happy to let people know what my problem is. I can still say it was a Tremendous day.

March 17, 2007 Posted by | A MESSAGE FROM REGGIE, neurofibromatosis | 1 Comment

TOBY KEITH

16a1.jpgIt happened!. Yes I went to the rodeo last night. Toby Keith’s performance last night was Terrific! There were lots of fireworks and lights. He has lots of energy and so did all of his fans. If you like country music, then the Reliant Center in Houston was the place to be last night. 19a1.jpg

My sister, Lisa,  and I enjoyed the music, as well as the food.

Smoked Turkey leg. mmmm. Couldn’t find the Deep fried Oreos. I would like to know who went to the Toby Keith concert? If you went to the concert post it here. I would love to hear about it. And if you know where I can find the deep fried Oreo I would love to hear that as-well. I will post a few of the pictures from the concert soon. Please stop in again. HOW DO YOU LIKE ME NOW?

March 14, 2007 Posted by | RODEO | 13 Comments

TOBY KEITH TUESDAY NIGHT

toby-keith.jpgWell, I am ready for the big night tomorrow! I’m going to see Toby Keith Tuesday at the rodeo. I’ve only been to three rodeos in my lifetime. I know this is going to be a terrific one being that it’s country music. I just got my cowboy bling belt buckle. It you see a good-looking guy in black most likely it will be me. Feel free to say hello. And I will post my experience. I would love to hear from any of you that might attend the Toby Keith concert.

March 12, 2007 Posted by | RODEO | 10 Comments

PERSONS WITH NF1 OR NF2

My message this morning includes all my friends, that have a concern with both types of nf. We can support one another. I received a very nice message that prompt me to post this note. this person, has nf2. I was so happy to read the email. The concern was that he has nf2 He may have felt left out. I hope not. Please know, I would like to hear from anyone who has both types of nf, concerned family members, and friends. Lets start posting. I would like to know you are there. Your post may very well help some one. All of you are teling me what a help I have been. Well all of your emails and comments have really made me want to do more. Thank you for supporting me.

Make it a tremendous day

Reggie

March 12, 2007 Posted by | A MESSAGE FROM REGGIE, neurofibromatosis | 9 Comments

SOMETHING TO THINK ABOUT :)

This post is some what different from all of my earlier posts. I am asking all that have posted on my blog to share in this one. When things are going really well, do we believe it should be this way? Or do we expect it’s too good to be true.

You may have read in one of my previous posts, where I said I have never felt as happy as I do now, now that the Reggie Bibbs web-site has begun. So many of you have written and made a lot of kind comments. The plan is to help make NF more known and talked about like so many other disorders. It seems as though lots of my friends, and I call them my friends because I have heard their story and I have learned they too have NF. They write and support me. Not thinking of themselves and their family members who have NF. I get so much joy out of this and I hope to reach a lot more. I hope we can reach others who do not have NF but would like to know more about it. We will, and we will make a difference. Let me know your thoughts.

March 11, 2007 Posted by | A MESSAGE FROM REGGIE | 2 Comments

Lunch at Arturos in Uptown Park

reggie-white.JPGToday I had the pleasure of having lunch with two great friends. Talk about great food, that was the best. After lunch and during we had a nice conversation about what each of us are working on. The World Famous Arthur Meyerson of Houston, Lou Congelio oftres-amigos-1.jpg STANANDLOU and of course me, Reggie Bibbs. All from Houston. It just felt great to get away and relax with friends. I want to share it with you. I hope you enjoy the photo. What I would change about lunch today. Just ask Toby Keith. JUST TALK ABOUT ME. ME ME ME!

March 9, 2007 Posted by | Friends | 6 Comments

MY HEART BELONGS TO CAROLYN FARB!

bigredheart3.jpgI want to thank Dr. Carolyn Farb for the difference she has made in my life. My friend Carolyn is a big part of my success. It was Carolyn who had the idea to put on a huge fashion show on Valentine’s Day in the middle of the Galleria Ice Skating rink. She called it MY HEART BELONGS TO DADDY and had a lot of celebrities in it like Warren Moon, Carl Lewis, Governor Bill White, and lots more!

It was very successful and all the money went to open the NF Clinic at M.D. Anderson Cancer Center.

I am so thankful to Carolyn for making it possible for all of us to have a place to go who suffer with NF. That is just one of the many fundraisers that Carolyn has done for the foundation I’m happy to be a part of. Of course Carolyn has helped tons of other organizations like the Texas NF Foundation.

Everything that I have learned from Carolyn has gone into my “Just Ask!” awareness campaign. My website is to bring awareness to NF, and I hope all of us that have NF can meet here for support from one another.

I thank you Dr Farb. My Heart belongs to you.

March 8, 2007 Posted by | Friends, neurofibromatosis, Texas NF Foundation | 5 Comments

UPS FRIENDSHIP

ups.jpegYesterday I went to the store. I saw a ups guy who I knew from years ago. I met him while working at Goodwill Inds of Houston. I was in Shipping, and part of my job was to receive all ups, FedEx, and airborne packages that needed to be signed for. Goodwill was a great job and learning experience for me. I will never forget my friends there. The ups guy remembered me and now he will learn about my site. He seemed happy that I gave him my card. He read the card in front of me. I am so happy that he talked to me first and made the comment that we have known each other for a long time. He seemed happy about that. I know I’m the happy one. Thank you all.

March 7, 2007 Posted by | Friends | 6 Comments

GETTING THE WORD OUT. NF

reggiestill.jpgWow! What a Terrific day I had. I was contacted by Mrs Meko White from Missouri, who was searching for information about nf and found out about my site on www.youtube.com. Mrs Meko is very supportive and knows a lot about nf. She shares with me the desire to get the word out about nf. I am happy to meet others who are helping me in this battle against nf. I would like to hear from those of you who know about my site. Tell me how you heard about it. Thank you Meko.

March 6, 2007 Posted by | Friends | 6 Comments

SHOPPING

images.jpegYou’ll never guess what happened to me today so I had better tell you. I went to my favorite Western store, Cavender’s. I was shopping for a buckle for my belt. I noticed someone in the store noticing me. He came over and spoke to me and asked how my day was going. I told him like I always say when asked. Terrific! with a smile.

After my purchase, I looked around for the gentlemen that I just spoken to. I saw him and he could see I wanted to talk to him. He came over. Because he was so nice to me, I couldn’t leave without letting him know how happy he made me feel. I explained to him about my disorder and my website. As I talked to him I could see his eyes filling with tears. He was a very big guy yet he was very sensitive to how I felt and what my life is like. He seemed very happy that I didn’t mind talking about what happened to me. I gave him one of my business cards. He said it was a good way for me to get the word out. He thanked me. I am the one who should be thanking him. I can say for sure I will shop at Cavender’s more often.

March 5, 2007 Posted by | RODEO | 8 Comments

Photos from my friend, Kevin Lynch

reggiefriend.jpgThese photos of me were shot by my friend, Kevin Lynch. I met him when he worked for Greg Gorman. He works for him self now. I stayed at his house in Malibu. We went to Malibu and took the photos there. It was after they had that big fire years ago.

March 4, 2007 Posted by | Photos | 2 Comments

WESTERN ATTIRE ALL YEAR ROUND ?

secondfamily_web.jpgToday I went to Cavender’s www.cavenders.com to buy Western gear. I always shop at the S. loop store # 23. I love that particular store. I bought a nice looking belt. Want to be ready just in case I get to go to the Rodeo, or I have the opportunity to meet ASLEEP AT THE WHEEL. If not, I will have the western clothing for “Go Western” day at our Church Sunday.

March 2, 2007 Posted by | Photos, RODEO | 10 Comments

“Just Ask!” is in the news!

Click here to watch the newscast!

newscast

March 1, 2007 Posted by | neurofibromatosis, News | 13 Comments

GUESS WHO’S IN THE CHRONICLE THIS MORNING ?

Reggie article 3/1/07Well, not to gloat, But all of you that have been supporting me, by viewing my website and my blog. I want to let you know The Houston Chronicle is running an ad on me. I’ am so thankful that we are getting information to the public about nf. This week you can see the article, if you are the areas of, HOBBY AREA SUNNYSIDE / PARK PLACER/UH/TSU/ALMEDA/GULFGATE. Would like to hear from anyone who reads the article and tell me your thoughts.

Click to view Chronicle article 3/1/07

March 1, 2007 Posted by | ADDY Awards, neurofibromatosis, News | 5 Comments