Neurofibromatosis Cafe A place to talk, have fun and share.

Recently, I shipped a Just Ask t-shirt to Gabriele, a new friend, who lives in Germany. I want to share her message,  But first I want to say, I am impressed that someone from as far as away as Germany took time to write such a nice message and also order a JUST ASK T-SHIRT.  Now!  that is a cool feeling.  Someone supporting what I do to bring awareness to nf.  Gabriele writes…..

“Hello Reggie, I´ve written you a note just a few minutes ago- but before I got the chance to finish it, I hit the “submit-button” by accident. To make shure you receive it all, I´ll start all over again. I´ ve seen a video with you and Oprah on you tube. I found it very touching and think you are very courageous. I was born with NF too and since the right side of my face was damaged I had operations since I was 3 years old. Now I am almost 45 and ´ve been leading a normal live. My parents gave me a lot of courage on my way- thats why NF couldn´t stop me from doing anything. I have to admit that there was no chance for me to become a model but I am a few inches to short anyway I wish there where more people like you- letting the public know that a face isn´t a vital organ. That people like us have a brain and a heart and   are liveable and loveable beings. One of my reasons to write you was that I wanted to order a “Just Ask” T-shirt. In the meantime I´ve found the link on your homepage. The other reason was that I wanted to tell you “Keep going” … well- there is still so much I would like to say, but I better write a book… A book? Why not…. I hope you had a nice x-mas and want to wish you a happy new year Gaby, from Munich Germany

This weekend I got the shock and surprise of my life! I was going through my emails looking for a phone number when I came across an unopened email dated November 14! It was from my new friend Kevin Nealon, from Saturday Night Live, who I had just met the night before.

I have no idea how I missed this very important email but I guess it was because I was traveling and wasn’t able to check email till I got back home. Anyway, here is the very nice email that Kevin wrote plus the photos he sent.

Hey Reggie,
So great meeting you last night, and your friends! I’m so
flattered that you guys came to my show. Oh, loved your website, too!!
Susan and I loved checking out each category. Great videos and pics,
great coverage on the news stations as well. We’re so impressed with
your courage and your raising awareness of NF. What a difference you
are making! Please keep us updated on the foundation.

Attached are a few pictures of me wearing your shirt. Btw, it
fits me like a glove. I have a new cause now.

Best wishes,
Kevin and Susan

Most of you have seen the photos from my trip to Manhattan Beach California, when I went to visit my friend, Scott. Well, on the visit, Scott suggested we go see Kevin Nealon at the Comedy club. That is where it all happened. After the show Kevin came over to meet me. It was there when I shared with Kevin and his Wife Susan about NF. What a nice couple they both are. So kind and understanding to NF, and the JUST ASK campaign. I’m proud that Kevin is wearing one of my JUST ASK! T-shirts. You never know where you may see one next. Thank you Kevin and Susan for your support. Hope to see you soon.

Today is September 7th.  Just returned for Camp For All.  If you have never atten The Texas Neurofibromatosis Foundation’s, Camp For All. Trust me. You must attend next year.

I’m feeling really emotional.  Joy and sadness.  I met so many new friends as well reunited with friends from prevouis years.  Some of my friends don’t have NF but attended the camp to support me and have fun.

There are lots of Activities to enjoy.  What I enjoy mose of all.  When a parent or someone that met me on myspace, facebook or the local news, they come to talk to me and just want to talk.  It’s a feeling that I could never express in words.  It’s the greatest support one can ASK for.  For me and the person I have the pleasure of talking to.  It’s like getting a new family member.  And it hurts when it’s time to go home.

The joy is that you can look forward to the next year.   And it gets beter than that. You can keep in contact via email until the next camp. I want to say thank you to all of you for a greak weekend. If you see your photo and you want to add comment please do so. Add you name to it as well in the comment box.  We would like to know ideas you have for nexy year. what you will like to see to make it better. I will pass your ideas to The Texas NF Foundation.

PHOTOS

Wee Lou “Louise’ Cunningham

On Jul 24, 2008, at 8:39 AM, wee_lou_c wrote:

No unfortunately i had the scan yday and it said the tumor has
grown very large now because of this i would be cut off from the
things i call life also there wud have been a much heavier risk of
me dying straight away today. So i have chosen not to have this but
live slightly longer 2 years at the most and enjoy my family
friends and things i enjoy doing.   I thot my outcome would be so
much brighter but yet again i have to keep fighting to enjoy wat i
have left. Dont be sad.

Wee

Wee, am sad but in a way happy that at least the next two years will
have a quality of life that is better than if  you had the
operation. I wish I was as brave as you, Louise, to calmly say I have
two years left at the most. I wonder if there is a way to get your
records shipped to M.D. Andersen Cancer Center so our NF doctors here
could take a look at them. Are you flying back now or driving?

Lou

Just received this from my friend, Dr. Moore, at MD Anderson. I’m writing my letter now! I hope you can too! Here are 2 links that will make it real easy for everyone to send a letter!

Or, scroll down to the bottom of this blog and you’ll find ready-made letters to key subcommittee members . All you have to do is replace Lou’s Name and Address with your own then FAX it to the number on the letter. It’s that easy! (more…)

Lou and I are in the middle of what I thought would be a very difficult task: asking celebrities, artists and friends to draw a doodle for National Doodle Day benefiting NF!

Well, I’m happy to say it was very easy thanks to some very special friends! With the help of some special people who want a cure for NF as much as I do, friends from all over the country whipped out their writing instruments and doodled for NF. Some of them you may know like Sugar Ray Leonard. (SEE DOODLE ABOVE LEFT)

Some are friends of my friend, Lou. A big thank you to Lou and all of you who played a big part in this effort to Knock Out NF Once and for all. Take time to see all the doodles on my photo page and go the National NF Doodle Day website!

All doodles will be posted shortly onto ebay where you will be able to bid on your favorite NF doodle!!!

Bid high, soon and often and do your part to help raise money for NF.

Doodlers include Sugar Ray Leonard; designer Andy Dearwater; artist/gallery owner Dan Allison, stamp art artist Kim White; printmaking professor Peter Massing, illustrator Matt Loftiss; America’s Greatest Artists, The Art Guys; writers Lou Congelio and Matt Walsh; Lou’s daughter, Elena Congelio; yours truly, Reggie Bibbs; STANANDLOU’s Kate Wiggins and Rhea Diaz; and my nephew, Jordan Walker.

(more…)

Tonight was another great night at the Houston Livestock Show and Rodeo!

I started out with the live stock show and all of the other fun things. Oh, my God! Did I enjoy the FOOD. Everything was to die for. Deep fried Oreos, steak burgers, foot-long sausage sandwiches, giant cinnamon rolls with lots of icing. But don’t take my word for it, check out the photos for yourself.

Click here to see photos from today!

I went to the Rodeo to see Martina McBride. She was great and the music was terrific! She really sang her heart out. She sang all of her best songs and the crowd loved it. Of course, so did I. Martina loves Houston and she looks forward to her show here every year.

I know why she loves Houston. I feel it every time I go out. So many people here have been so kind to me. I’m thankful to be in a great city like Houston. It made me feel so good when people I never met came up to be today and spoke kind words to me. You will see them in my photos. People like that are heroes to me!

Well, 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? (more…)

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 (more…)

To 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