neurofibromatosis cafe

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

4TH OF JULY CELEBRATION

neurofibromatosisHello Friends We are coming up to another day of celebration. Wednesday July 4th Houston is having a day of fun, music and a large display of fireworks. Come join the fun! I plan to be there wearing my JUST ASK t-shirt and would be happy to meet new friends. I always get a little nervous at these large events, but I’m sure with the great people we have in our great city, I will have a TREMENDOUS time. I hope to get some pictures meeting more friends. See you there.

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June 30, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Awareness, Friend, Friends, Fun, Just Ask!, neurofibromatosis, nf, NF1, Photos, Some People, T-shirt | 8 Comments

MY NEW FRIENDS IN THE UK.

i183123312_96166_4.jpgI’m so happy that I am meeting new friends, to share our stories with one another. I asked Katie’s mom Vanessa about the UK. She writes a lot of things I enjoyed reading. I wanted to share them with you. Read below. I’m looking forward to the video, which I hope to post here. Thank you Katie and Vanessa! Continue reading

June 29, 2007 Posted by | About Me, Astros Game, Awareness, Friend, Friends, Fun, Fundraising, Help, Medical, neurofibromatosis, News, nf, NF Bulletin Board, NF1, Video | 1 Comment

“JUST ASK!” IS OFFICIAL

656515238_bdfd0d2b77.jpgToday I went to the Harris County Court House and filed JUST ASK! as a DBA in the STATE OF TEXAS. I am so happy! This is terrific news because it makes me feel that what I’m doing is very real: To the State of Texas and to the people who are affected by neurofibromatosis.

Not only did I file a DBA but I also opened a business checking account at Compass Bank under the name “Just Ask!” The checks will have my logo on them (drawing of my face) and “Just Ask!” Continue reading

June 28, 2007 Posted by | About Me, Appearances, Awareness, Fundraising, neurofibromatosis, nf, NF1 | 10 Comments

Fighting for Katie!

This is an email I received from my new friend in the UK! – Reggie

Hi Reggie,

Im loving your web site, i have only just stummbled across it and as its
very late here in the UK im off to bed in a mo. i shall have a good old nose through in the morning. I just wanted to share my daughters site with you. Like you she has been a real star and battle through the toughest of times. Keep up the good work reggie feel free to contact us if you wish. All the best to you. take care, Vanessa Continue reading

June 28, 2007 Posted by | neurofibromatosis | 3 Comments

BEDROOM REPAIRS

p1010015.jpgp1010017.jpgI call this phase 1. There is bad news and good news. There was a small fire in my room. The good news is that my computer was not damaged. The pictures I have posted are the begianning of the repairs.

reggiebibbs-128.jpgBelieve it or not, but this is a major improvement. The green wall is gone.

The hole in the wall is repaired. I have a new desk, or work area. I have plenty of room which I did not have before. A lot has been done, and still more improvements are to come. Stay tuned for the finish project. This makes it a lot easer to do my web-site posting and flickr post.

June 27, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Fun, Help, neurofibromatosis, News, Photos, Uncategorized | 3 Comments

Dorothy at IKEA Rocks!!!

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Byron, Lou and I went to IKEA today to do a little shopping for my bedroom. I had just finished painting my bedroom and Lou suggested it might be a good time to do a little “spring cleaning” and take a new look at my bedroom. So we went to IKEA for ideas and saw this great bed for like $200! So I bought it! Continue reading

June 24, 2007 Posted by | Awareness, Friend, Fun, neurofibromatosis | 5 Comments

Texas NF Foundation presents $90,000 check to MD Anderson

thecheck6.jpgToday I was invited to join members from the Texas NF Foundation and doctors from MD ANDERSON HOSPITAL for a special presentation.

Minerva Terrill, a board member of the Texas NF Foundation, presented a check for $90,000 to the hospital for NF research. This is something all of us who are affected with NF can be very excited about.

Great researchers and clinicians are out there looking for a cure and there are great people like Minerva and Cindy Hahn who are doing what they can to raise the funds needed to fund that research. We have a lot to look forward to. Stay tuned! I know more good news is ahead.

June 21, 2007 Posted by | Awareness, CTF.ORG, Friend, Friends, Fundraising, http://www.ctf.org, Medical, neurofibromatosis, News, nf, NF Bulletin Board, NF1, Photos, Research, Texas NF Foundation | 5 Comments

MESSAGES THAT MEAN A LOT TO ME

Today I received a very nice email from John, in Alaska. I am thrilled that what I hope would happen with my site, is happening. Others are learning they are not alone when they see my site as well as other site that support and discuss NF issues. I’m happy that this can be a meeting place to share our stories. We all have stories and anyone with NF is what I would call a real trouper. You are strong and you can make it. Lets support one another. Please read John’s message and give him support. Thank you . Continue reading

June 19, 2007 Posted by | A MESSAGE FROM REGGIE, Appearances, Awareness, Friend, Friends, Links, Medical, neurofibromatosis, News, nf, NF1, Some People | 5 Comments

Guess where I went tonight?

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June 18, 2007 Posted by | Friends, Fun, neurofibromatosis | 5 Comments

TASTE OF TEXAS FUN

p1010076.jpgPeople are beginning to JUST ASK! This is GREAT! Friday night my family and I went to one of our favorite restaurants. Taste Of Texas.

We had the best time I can remember. It was 15 of us. Sisters, nieces, nephews, brother sister in-law,and Mom. Of course ME ME ME! We all sported out JUST ASK t-shirts. We felt like stars. We got a lot of smiles and people commenting on our t-shirts. Lots of you ASKED. I thank all of you that wanted to know. It was a wonderful family night for us. Thanks to the Staff of The Taste Of Texas. You did a TREMENDOUS job as always!

June 16, 2007 Posted by | About Me, Appearances, Awareness, DESSERTS, Favorite Places, Friend, Friends, Fun, neurofibromatosis, nf, NF1, Photos, Restaurant, T-shirt | 8 Comments

HOPEFUL NEWS IN NF RESEARCH

NZ bee compound gives tumours the buzz-off

By Martin Johnston

Bees collect propolis to seal their hives.

Bees collect propolis to seal their hives.

A bee product from New Zealand has been shown to suppress tumours in mice, says a study presented to a scientific conference in the United States.

The researchers at a German hospital tested propolis against tumours that can occur in the nervous system and on skin in a condition called neurofibromatosis. Continue reading

June 14, 2007 Posted by | Appearances, Awareness, Medical, neurofibromatosis, News, nf, NF1, Research | 4 Comments

THANK YOU, NET 2

Last night I was invited to speak with Net 2 about my website, and neurofibromatosis. Wow! What a tremendous experience it was FOR ME. A great group that was very interested in neurofibromatosis and my campaign. I was able to share what it’s like to live with nf , and how I deal with it. I learned a lot from the group as well as I hope they learned more about nf. I feel blessed that the group received my message. Meeting Net 2 was just what I needed. Maybe if I hang around the group, I can learn more tips about making the perfect site for neurofibromatosis.

June 13, 2007 Posted by | About Me, Appearances, Awareness, Friends, Fun, neurofibromatosis, News, nf, Some People, Texas NF Foundation | 8 Comments

MY MESSAGE

Most of you may know a little about me. My Name is Reggie Bibbs. I have a disorder

called Neurofibromatosis, or NF for short. This disorder causes disfigurement, pain,

blindness, hearing loss, learning disabilities, and yes, even death.

Not only that but most of us who suffer with this disorder have everyday trials that may seem easy for you, but is very hard for us. For instance, how many of you give it a second thought about going out to buy supplies for your computer? You may worry about what you will wear? But that’s probably it. Continue reading

June 10, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Friend, Friends, neurofibromatosis, News, nf, NF1, Some People, Texas NF Foundation | 13 Comments

Flame Burger Video at Burger Bash!!!

Lou was playing with the video part of his digital camera and accidentally made a video. He’s pretty excited about it so don’t anybody tell him it’s prettylame. We don’t want to hurt his feelings or anything!!!

By the way, those burgers were the best as was the company and the hosts! I am so blessed to be have such great friends and support!

June 9, 2007 Posted by | Awareness, Friends, Fun, neurofibromatosis | 2 Comments

Texas NF Symposium Video – “OCULAR FEATURES OF NF I and II” – DR. RICHARD ALAN LEWIS

neurofibromatosis

“OCULAR FEATURES OF NF I & II”
DR. RICHARD ALAN LEWIS
Profesor, Departments of Opthalmology, Pediatrics, Medicine and Molecular & Human Genetics, Baylor College of Medicine

Dr. Lewis formerly worked with Dr. Vincent Riccardi during the early days of neurofibromatosis discovery, identification and research.

June 7, 2007 Posted by | neurofibromatosis, Texas NF Foundation, Video | 4 Comments

ADDY AWARDS

awards2.jpgI thought it would be nice to show some of the addy awards we won in neurofibromatosis. The awards are for the PSA and the work that is going on with the website. It is because off all the support you are giving. keep visiting my site and the blog. I thank you for your support

This show that we are starting to get notice. This is what we want. Its only the beginning. It a start of something big. I’m sure there will be more to come. You can rest a sure I will post the others when we receive more.

June 6, 2007 Posted by | About Me, ADDY Awards, Awareness, Fun, Fundraising, neurofibromatosis, nf, NF1 | 3 Comments

REGGIE’S HOBBIES (COOKING AND BAKING)

p1010016.jpgpatotoes BAKED BEANS Most of you who know me, know I love baking and preparing large meals for my family relatives and friends. Sunday’s are always fun.  That is the day the largest meal is prepared.  Yesterday was a nice meal, and I would like to share some photos with you.  Now this wasn’t the best meal, but we all enjoyed it and are very thankful that God provides for all of us  It you have some photos of what you enjoy cooking, grilling, or baking share your your photos and comments. And if you have tips that would be terrific.  I know I can use all the tips I can get.  Looking forward to your comments.   My favorite cake to bake is German Chocolate Cake.  And Cobbler.   Peach and Berry cobbler. You will get to see photos of that soon.  I would love to love to see your photots.

June 4, 2007 Posted by | About Me, DESSERTS, Friend, Friends, Fun, neurofibromatosis, nf, NF1, Photos | 2 Comments

Texas NF Symposium Video – Dr. Sharon Plon “Genetic NF Testing Update”

drplon_7.jpgFor all of you who missed the NF SYMPOSIUM presented by the Texas NF Foundation, the first presentation is now available by clicking HERE.

Dr. Sharon Plon, Clinic Chief, NF Clinic, TX Children’s Hospital and Associate Professor of Pediatrics and Molecular and Human Genetics,
Baylor College of Medicine presented “
Update on Genetic Testing in NF1 and NF2.” We will be posting the other 4 presentations just as soon as we can convert them to the proper format for easy streaming.

Thank you Texas NF Foundation for allowing me to record video and take lots of photos to share on my website. Also, thank you Josh Powers of STANANDLOU Advertising for editing the videos and converting them for digital! It was a Saturday full of great fun, great friends and great information!!! Plus, I made a lot of new friends!!! If you have never gone to one before, I definitely recommend you attend the next one.

June 1, 2007 Posted by | neurofibromatosis, Texas NF Foundation, Video | 1 Comment