neurofibromatosis cafe

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

A NOTE FROM KEVIN NEALON.

3090342427_26cb9dd5b3_b3090342561_eb020396fa_bThis 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.

December 8, 2008 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Awareness, Benefit, Celebrity, Favorite Places, Friend, Friends, Friends of NF, Fun, Fundraising, Help, Just Ask!, News, nf, NF1, Photos, T-shirt, Texas NF Foundation | 33 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

NEW FRIEND MESSAGE FROM A MOTHER WITH HOPE

2007-002.jpgHello Reggie,

My name is Eleanor and my daughter was just diagnosed with NF. We noticed her beautiful little “birthmarks” when she was born and her daddy took such pride because his little girl had the same marks as he did in almost the exact places.

dodge-and-sam.jpg

She later developed freckles on her armpits and I would tease her that the freckle fairy must have slipped off her nose and landed there instead dropping her bag full of freckles.

Just this week during a check up for a mole on my son, the dermatologist noticed the cafe au lait spots and turned his attention to my daughter. You can imagine my surprise. These were after all JUST freckles. Unfortunately, the doctor did not break the news very well. I was reeling.

It has been 4 days since we got the news and I have had every emotion imaginable. Every fear…how will she be treated? will people reject her?…how will she deal with it? Is this painful? no grandchildren? Continue reading

July 30, 2007 Posted by | A MESSAGE FROM REGGIE, Appearances, Friends, Help, neurofibromatosis | 164 Comments

FORTH WORTH MAYOR MIKE MONCRIEF

376702630_0e7ac2eb0e_o.jpgI received a wonderful letter from my friend from years back. At the time I met Mike Moncrief, he was Senator Mike Moncrief for the State of Texas. And now he is Mayor Mike Moncrief of Fort Worth. He and his wife Rosie have been very supportive in everything I have been involved in. You will see that in the photos in my picture section on Flickr. Mike and Rosie also wear one of my JUST ASK t-shirts. I’m honored to call them my friends!

Here is the email that he sent me today:

Mike & Rosie Moncrief, Mayor and Mrs. Mayor of Fort Worth

“Hey Reggie, I just visited your website and i was most impressed. The ongoing
challenge of raising awareness of NF and search for a cure is made easier by your efforts. By the way, I wear my Tshirt every chance I get and have had numerous folk come up to me and ask about it. Keep up the great work and you are more than welcome to post this email on your blog.

Your Bud,
Mayor Mike

July 1, 2007 Posted by | Appearances, Awareness, Friend, Friends, Fun, Fundraising, Help, Just Ask!, neurofibromatosis, News, nf, NF1, Photos, T-shirt | 4 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

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

An excerpt from NeuroTalk Support for people with neurological disorders and diseases

“Hi, My name is Camrin, at 15 years of age I was diagnosed with neurofibromatosis type 1. Neurofibromatosis is small tumors on your head or other areas of the body. Some of the symptoms might be brown spots throughout your entire body similar to birth marks. After the doctor diagnosed me with that I also had anxiety problems. I was than put on medicine called paxil. The teachers new that I was on it and they used to ask me if I took it or not. Sometimes, I would say yes and other times I would say no. I didnt like being on anxiety medicine because it made me feel so stupid.” white_lilies2445

NeuroTalk Communities

Continue reading

May 19, 2007 Posted by | Help, neurofibromatosis | , , , , , | 1 Comment