neurofibromatosis cafe

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

New Just Ask! T-shirt Design – Final!!!

reggieshirt_final_outlines

We have just ordered a new batch of “JUST ASK!” t-shirts! They will be shipped next week and will be available for immediate sale.

The new shirts are 100% cotton, Hanes Beefy Ts, available in 3x,2x, XL, L, M & S. Mustard yellow with distressed dark blue lettering.

$15 All proceeds benefit the Just Ask! Foundation.

To order, click here!

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November 6, 2008 Posted by | Fun, neurofibromatosis, tshirt | , , , | 6 Comments

HATS OFF TO THE COMCAST REPS IN HOUSTON / JERRY’S BACK FROM IRAQ!

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2264707003_77c16ccfde_m.jpgOn Valentine’s Day, I went to Comcast. I had a problem with my cable box and I took it back to Comcast. A customer service worker waited on me. Denise was very nice and helped me with my problem. It was then that she told me how happy she was to see me. And that she had seen me on TV. All of the customer service people were just as nice as Denise. I had to go back today so I asked if I could take their photo to put on the blog as a way to say thank you for being so nice. It’s nice to know that a company as big as Comcast can have employees as nice and personable as Denise and her friends. Please, if are in you the area, show some love to the great job the ladies are doing at the Bellaire location. Thank you Denise. And of course Phelisia, Patricia, and Jennifer. What a Sweet Heart of a Day for me!

477733757_4d51c49b23_o.jpgWELCOME BACK, JERRY TURNER!
Hey Reggie,
I made it!!!!For everyone who has never experienced a 17 hour non-stop flight……Don’t do it!!! I thought it would be worth it not to stop in Europe on my way back, but it’s not. At some point in there you need a break. With about 4 hours to go in the flight I was in absolute misery. I’ll give you a buzz tommorrow.
Jerry T

 

February 16, 2008 Posted by | A MESSAGE FROM REGGIE, About Me, Awareness, Benefit, Friends, Friends of NF, Just Ask!, neurofibromatosis, NF1, NF2, Texas NF Foundation | , , , , , , | 250 Comments

Meet Reggie Bibbs – I have neurofibromatosis

My name is Reggie Bibbs. I am on a mission to spread the word about neurofibromatosis. I figure the more people who know about my disorder, the more they will understand me, so I made a video. Actually, I’ve made a few videos. They can be seen on my website, blog, YouTube, Veoh and Vimeo as well as photos at my Flickr, Facebook and MySpace account. If you have neurofibromatosis or if you’re wanting to help spread the word, please click on the links above, leave a comment, send an email, add the urls as links to your blogs and sites or send to your friends and fellow NF people. The more we can band together, the stronger our voice will be heard. I thank you for reading this far and I truly hope to hear from you soon!

Make it a TREMENDOUS Day! – Reggie Continue reading

February 7, 2008 Posted by | A MESSAGE FROM REGGIE, About Me, Awareness, neurofibromatosis, nf, NF1, Texas NF Foundation, Video | , , , , , , , | 242 Comments

New Facebook Group – “Friends of Neurofibromatosis”

picture-1.pngTo All:

I have created a group on Facebook called “Friends of Neurofibromatosis.”

To those of you unfamiliar with Facebook, it is a FREE website that allows you to do a lot of things like post photos, videos, and friend links, much like MySpace, but with one very important difference. It allows members to form groups of like-minded people who share special interests and allow them to easily interact with each other.

I can’t think of a more perfect tool to use in building a community of people who are challenged by neurofibromatosis in one way or another than this. Whether you have NF, have a friend or family member with NF, or are just interested in helping people with NF, this is the website for you.

By becoming a member of this group, you will be able to connect with other people who share the same frustrations, burdens and pain of NF. You can pass along information that you think might be helpful to others. We can send time-sensitive newsletters to ALL group members with a click of a button when an important event or news item occurs.

Facebook will never replace this blog but it will provide us the means to meet new people, build awareness, share information, and, most importantly, help us build a community that helps provide comfort, education, distractions and support to all affected by NF.

Please check out the group at this link and if you can see the endless possibilities that this site provides, please join!

I thank you! —Lou http://www.facebook.com/group.php?gid=21960217912

February 7, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Community, Facebook, Friends of NF, Help, neurofibromatosis, nf, Texas NF Foundation | , , , , , | 153 Comments