neurofibromatosis cafe

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

We endorse the The Fight For Federal Funding For NF Research Petition to U.S. Congress. SIGN PETITION BELOW

To: U.S. Congress

Neuro-fibroma-tosis. Have you ever even heard of it? Probably not, even though it is the most common neurological disorder affecting 1 in 3000 people. Neurofibromatosis (NF) is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time.

NF affects all races, all ethnic groups and both sexes equally. And as of yet, there is no known cure for NF.Clinical drug trials are being conducted by ten major hospitals called the “NF Clinical Trials Consortium”. With these trials comes the hope of accelerating drug development.

SIGN PETITION Continue reading

May 11, 2007 Posted by | A MESSAGE FROM REGGIE, CTF.ORG, Fundraising, neurofibromatosis, NF1, Texas NF Foundation | 6 Comments

My favorite Mexican Restaurant – Tila’s Restaurante and Bar on South Shepherd in River Oaks!

Arthur Meyerson, Lou Congelio and I stopped at Tila’s on Friday for lunch.Arthur Meyerson, Lou Congelio and I stopped at Tila’s on Friday for lunch and had one of the most incredible meals know to man or woman. The service was great and we were made to feel very special. Thank you all!

More photos!

May 10, 2007 Posted by | A MESSAGE FROM REGGIE, Favorite Places, Friends, Fun, Links, neurofibromatosis, Photos | 10 Comments

MORE ON THE NF SYMPOSIUM

Elizabeth Bertrand during Dr. Slopis Q&AThe NF Symposium was terrific! I want to talk about how I felt meeting so many new people I can now call my friends. At the symposium, one of my new friends purchased five of my shirts in support of my JUST ASK campaign. I received tons of wonderful messages on the Children’s Tumor Foundation bulletin board. I’m happy to be a part of the board and meeting new friends. You can see from the photo the three of us are happy campers.

May 9, 2007 Posted by | A MESSAGE FROM REGGIE, CTF.ORG, Friends, http://www.ctf.org, neurofibromatosis, News, NF1, T-shirt | 1 Comment

THE TEXAS NF SYMPOSIUM WEEKEND

This should be a terrific! weekend. The Texas NF Foundation is having a NF symposium in Houston. To he held at Texas Children’s Hospital. I will be there in hopes of meeting you that have ask will I be there. Its really exciting to meet more people who are wanting to find a cure for our disorder. Hope to see you all there. Who knows, I may have a few questions for you. 🙂 It will be fun. Plan to enjoy your self. I know I will.

May 4, 2007 Posted by | A MESSAGE FROM REGGIE, Friends, Fun, neurofibromatosis, News, Texas NF Foundation | 2 Comments

GO ASTROS! MY FIRST GAME AT MINUTE MAID PARK!!!

Reggie Bibbs First Ever Astros Game!!!WOW!!!!!!!

What can I say but WOW!!!!!

I have always wanted to watch the Astros in person but was always afraid to be in crowds among people I thought would be afraid of me or not want to be around me. I WAS SO WRONG!!! I had the best time of my life!!!! I felt like I was surrounded by friends and I have to tell you, that doesn’t happen very often.

Thank you, all of you who came up to me and said hello and took pictures with me. You have no idea what that simple act of kindness meant to me.

It was the greatest day of my life!

I want to send an extra special thank you to Amanda Ludeke, on-air personality at Sports Radio 610. Thank you for introducing yourself to me. Thank you for making me feel so special.

And thank you Jay Sitta of CBS Outdoor for the incredible tickets!!! You guys rule!

April 30, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Astros Game, Friends, Fun, neurofibromatosis | , , , , , , , | 5 Comments

Reggie Bibbs First Ever Astros Game!!! Photos Now Online!!!

CLICK HERE TO VIEW ALL THE PHOTOS!!!

Welcome to Minute Maid Park!

CLICK HERE TO VIEW ALL THE PHOTOS!!!

Thank you to all the new friends we made today at Minute Maid Park!!! What a Tremendous Day!!! Thank you all who came up and introduced yourself to me! You really made my day!!! Continue reading

April 29, 2007 Posted by | A MESSAGE FROM REGGIE, Astros Game, Friends, Fun, neurofibromatosis, Photos | , , , , , , , | 7 Comments

WELCOME TO MY BLOG AND MY NEW FRIENDS AT WWW.CTF.ORG AND THE NF EUROPEAN MEETING!

Do you think the Heritage Building makes me look fat?Hi Everyone,If you are visiting this blog for the first time, welcome!

The purpose of this blog is to serve as a meeting place for people who have NF, or who knows somebody with NF or is just interested in learning more about NF. But no matter how we are connected to NF or this blog, I know we all share the same goal: to find a cure. Continue reading

April 28, 2007 Posted by | A MESSAGE FROM REGGIE, CTF.ORG, Links, neurofibromatosis, News, Texas NF Foundation | , , , , | 14 Comments

This is what gets me excited!!!

reggiebw.jpgHey Reggie!

You’re doing awesome work brother. I was diagnosed with NF from birth and I’m very thankful for what you’re doing. I always felt like I was alone until a few years ago I’ve found some really awesome NF friends. (one of which shared your video and site with me) Congrats on your awards. I plan on buying one of your shirts when they go for sale.

Jeremy

April 26, 2007 Posted by | A MESSAGE FROM REGGIE, Friends, neurofibromatosis | , , | 5 Comments

FRIENDS AND DOCTORS WITH MY T-SHIRT

p1010002.jpgp1010001.jpgI had a TERRIFIC! day. I went to where my brother Byron is employed, Macks Transmission. I had a chance to talk to Byron for a short time. My visit was with my friend Jerry T, who works in one of the offices. Cool guy. Here I’m posting the photos of my friends that bought shirts today. But that’s not all. I also saw my doctor at MD Anderson.

Dr. Diwakar Balachandran has been very supportive of my work with nf awareness. Thank you Dr. Balachandran and Jerry!!!

April 24, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Friends, neurofibromatosis, T-shirt | , , , , , | 16 Comments

BREAKING NEWS – ONLINE STORE NOW OPEN!!!

reggieweb.jpgThis just in, I’m happy to say the Reggie Bibbs JUST ASK t-shirts are ready for on-line purchase. Help us raise awareness of neurofibromatosis by buying your very own “Just Ask!” t-shirt and wearing it proudly!!!

The store is now ready to fill your order. I will personally fill all orders so order soon and often!!! Order as many as you like. They make wonderful stocking stuffers, birthday presents, bar mitzvah gifts, you name it!!!

And, as always, thank you for your support!

To order, go to www.reggiebibbs.com and click on STORE!

April 23, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, neurofibromatosis, News, T-shirt | , , | 10 Comments

DRIVE-IN THEATERS

wichita_81drivein.jpgWhere are all the Drive-In Theaters? I remember growing up it was easy to find a Drive-In Theater. My memories of them are fun. Watching movies from the car with your brothers and sisters. My brother and I recently talked about this the other day. What happened to all the drive-in theater’s? Are they safe? Would you go to a Drive-In? How do you feel about them? DRIVE INS

 

April 23, 2007 Posted by | A MESSAGE FROM REGGIE, Fun, News | , , , | 11 Comments

ATTENDING THE MAY 5TH NF SYMPOSIUM

To all of you have have been supporting me, by your visit to my site and leaving comments on my blog. I do plan to attend the nf symposium. May 5th is the day I have marked on my calender. I would love to meet all of you that have been a part of the great things that are happening on my site. I will be proudly wearing my JUST ASK t-shirt. I hope to see you there. If you plan to attend. post it here. Looking forward for making new friends.

April 18, 2007 Posted by | A MESSAGE FROM REGGIE, Friends, neurofibromatosis, Texas NF Foundation | , , , , , , | 6 Comments

NOT BEING AFRAID TO BE WHO YOU ARE

I wanted to post this blog in hopes of getting people talking, And to get your thoughts on this topic. Those of us that have nf, and the chaining appearance that nf may has caused. Its something you have to live to really understand. I have learned something sense my video on youtube and my website. That is, if you just put it out there, then people will except it. If we let people see who we are and explain it we will be accepted. I never thought in a million years believe that I would have my picture on a website with my picture. The acceptance that I have received from people that have nf, and those that have never heard of nf, have been a tremendous support. So I encourage you. If you have nf or not its OK. Let people see who you are. If they accept you that is TERRIFIC! If not, it’s not you that have the problem. Don’t lose out. Someone may be helped by meeting you. Give it a try.

April 9, 2007 Posted by | A MESSAGE FROM REGGIE, neurofibromatosis | Leave a comment

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

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

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