neurofibromatosis cafe

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

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

35th Annual 2008 World Championship Bar-B-Que Cookoff

wcbbqc_wide.jpgWell, tomorrow, Feb. 28, 2008, kicks off the 35th Annual Houston Livestock Show & Rodeo with the World’s Championship Bar-B-Que Contest and I’m going to be there enjoying my fair share!

Yes, I plan to be there eating all the que I can stand. I hope to get lots of photos to share on my blog and flickr page. It’s going to be a fun night.

Anyone else going to the cook off or Rodeo? Continue reading

February 27, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Friends with NF, Just Ask!, Music, neurofibromatosis, nf, NF1, NF2, RODEO | , , , , , , | 117 Comments

Friends of Neurofibromatosis Group on Facebook

Dr. RiccardiTo all my friends who are reading this blog, I’d like to introduce you to my “Friends of Neurofibromatosis” group on Face Book. We have quite a few members now, over 70. I am now in contact with a few good friends that I had lost contact with from the 1980s. My friend Dr. Vincent “Vic” Riccardi is now part of our “Friends of Neurofibromatosis” group. I’m sure anyone who has NF may know him or have heard of him. Dr. Riccardi is a legend when it comes to neurofibromatosis research and treatment. He has not only been a good doctor, but a good friend. He has done a lot for NF. At one time he was on the Board of the Texas Neurofibromatosis Foundation. He was its Medical Director for many years helping decide where to give the money we raised for research. Hopefully, maybe we could get him to come to the blog from time to time.

n71001931_31763618_8129.jpgTwo other friends have showed up too! Megan Phillips and Andy Ganster are now online with us. Megan, Andy and I shot some TV commercials with Lou back in 1989. That’s when we first met Lou through Bob Hopkins, then the TNF Executive Director. Those were some pretty serious commercials but they helped neurofibromatosis get some much needed awareness.Andy Ganster

I hope anyone visiting this blog will also join us on Facebook as well. We will all learn as we go alone on Facebook. The games and quizzes are fun and challenge. It a good way to find friend you may have lost contact with. Believe me, I know!

Here is the link!

February 20, 2008 Posted by | Awareness, Facebook, Friends of NF, Friends with NF, Fun, neurofibromatosis | , , , , , , | 315 Comments

Emily’s Name-My-Baby Contest!

y1p3lb28exaadeupbygs6ljvchkt687fu08plfbpuxe1g9ggcoz98ivujlltbg8-w38nmhdxtpmsto.jpegI have a baby due in March. This is a contest to help my husband and I select a name, and also to have some fun. We don’t guarantee we will use a winning name selected for the contest, but it’s a real possibility. Submit your entry via this blog per the instructions below. Enter as often as you like, as many complete submissions per blog entry as you wish.
– Emily
Continue reading

January 29, 2008 Posted by | Awareness, Emily's Name-My-Baby Contest!, Friend, Friends with NF, neurofibromatosis, T-shirt | 155 Comments

2008 Houston Livestock Show and Rodeo

06_95_imgp1439.jpgHouston, It’s almost time to Rodeo!

Cowboy Up, America! When a cowboy’s in a pinch, he just tightens up the cinch, spurs his horse and rides right through it, cause that’s the way the Duke would do it. He’d Cowboy Up.

This year it’s going to be another terrific year for the Houston Livestock Show and Rodeo. Just as I did last year, I will be there enjoying all activities for the 2008 show.

This year I plan to see more of the livestock show then I did last year. As for music, there are several performers I want to see this year. There are two I have in mind now, that I want to see Rascal Flatts and Tim McGraw I will see more then one, I hope. All that to look forward too, and I haven’t even started on the great food.

How many of you are planning to go the the Rodeo, and who will you see? It would be a great idea if any of you go, to take pictures and send me a photo and I will make a section for our photos for this year on the blog and Flickr.

January 12, 2008 Posted by | Friends, Friends with NF, Fun, Music, neurofibromatosis, NF1, Photos, RODEO, Texas NF Foundation | , , , , , | 250 Comments

Reggie Bibbs Wikinews Interview

17115693_160x120.jpgReggie Bibbs was interviewed on Nov 23, 2007 for Wikinews describing what it is like living with neurofibromatosis and what he has done via his website, blog and other resources to increase awareness of NF.”

Click to watch Reggie Bibbs interview on Neurofibromatosis

November 29, 2007 Posted by | About Me, Awareness, Blogs, Celebrity, Friends with NF, M.D. Anderson, neurofibromatosis, Research, Texas NF Foundation, Video | , , , , | 24 Comments