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

The University Of Texas, Health Science Center, is in the process of conducting Rapamycin clinical trials, to treat NF patients with tumors on the body.  I’m happy to say that I’m one of those being treated.  I feel hopeful as well as others members in my family. My mother and sisters are happy to take part in this study.  Second day in the study, and looking forward to what I believe will be a huge step in finding a cure for NF.   I also plan to give updates on any improvements I see on my tumors.

Anyone needing information about taking part in the study, stay tuned. I will have more information on who to contact in Houston, for The Rapamycin Therapy.

A friend of mine and Reggie’s, Jason McElweenie, submitted Reggie’s name to host a panel for next years SXSW: Becoming An Inspiration – One Pixel At A Time http://panelpicker.sxsw.com/ideas/view/2339

The description is as follows:

Reggie Bibbs has been on a one man crusade to raise awareness for neurofibromatosis (NF) come listen to him tell his story and help you and your organization turn your clients and friends into raving fans for your company or group

Here’s where we need your help: This is a 3 step process. A panel is submitted and then placed in the PanelPicker where the public comments and votes on it. After the voting and commenting is done a group of SXSW insiders vote on which ones they like and the board at SXSW also votes on which one they like. If the public comments and votes a lot for this one we have a chance of swaying the other two parts of the in our favor so now we have to promote, promote, promote.

I hope this can further raise awareness for Reggie and NF, speaking to a crowd of early adopters can do nothing but help raise awareness. If this panel is selected I say we plan a sort of media blitz to make Reggie the unsung hero or face of the 2010 SXSW conference. First thing we need to do for Reggie is get him on Twitter I have registered his name http://www.twitter.com/reggiebibbs.

Can you send the PanelPicker link above to everyone you know and ask them to not only comment but also vote for the panel?

This would be an incredible experience for Reggie as well as a great boost to his mission to spread the word about neurofibromatosis.

If you could take a few minutes to help, it would mean the world to me and Reggie!

Thank you,

Lou

Lou’s vacation photos from Houston to New Orleans to Memphis TN to Nashville TN to Cincinatti OH to Youngstown OH to Franklin PA to Cleveland OH to Knoxville TB to Tuscaloosa Alabama to New Orleans to Houston

We had a great Music Nite last Thursday Nite! We decided we needed to work on our music more, especially now that we have a new member to the group, writer/composer/musician, Mark Sansoucy.

Mark premiered the song he wrote, “Just Ask!” last Thursday and it was killer. With just a little more practice, this could be the Neurofibromatosis National Anthem!

WATCH THE VIDEO

SEE THE PHOTOS

This is a blog that all School Students will want to comment on, as well as parents. It is that lovely time of year again. YES! School is out for the summer. woo hoo.  Lets talk about some of the fun things we can suggest for those who don’t have a clue of what to do for the little ones who have all this time to spend at home. And for those of us who have nieces and nephews that want something fun to do, post it here.  Something that will keep them busy and the uncle happy because they are happy having so much fun.  See then everyone is happy all summer long.

My favorite time of the year is Christmas. Here are some fun photos taken around the office I wanted to post.

I want to wish my friends and fellow bloggers a Merry Christmas and a Joyful New Year.

I will be here on the blog all week ready to blog with anyone who posts. Lets talk about what you have planned with family or friends.

Look forward to seeing you here.

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.

Lou and I had an incredible time at the Bayou City Bosses Fundraiser last Saturday!

Everyone came up to us and said hi and posed for photos. I think Lou has a thing for Audiomind because he sure took enough photos of her!!! : >

Enjoyed talking with some of my favorite skaters including Carmen Geddit, Death by Chocolate, Sinista Sista, Mistilla the Killa, Audiomind and all the rest too numerrous to mention.

The next match is June 8th and Lou and I already have our tickets!!! If you’re interested in going, get your tickets today as they’re only going to sell 300 of them!

What a great day for a parade!

My second year going to the Art Car Parade, and just like last year, I had a terrific time.

Nice cars and so many to choose from that might be the best one. One that sticks in my mind, well it’s really two. The Grapes are and the Red wagon.

I also met a lot of people that was me last year and and new people that saw me on the news last week.

All the photos are here for you to enjoy. Just go to my photo page to view. Please leave a comment!

Wow! Tonight I was invited to the Rodeo once again. It was a more then Terrific night. The music was the best I’ve heard so far. Clay Walker sang all of my favorite songs and encouraged everyone to join in. Pretty cool. It was cool to see him ride a horse to the stage. A real Texan.

A big thank you to Laurie Selzer, from MNI (Media Networks Inc) for allowing me to join them in the Verizon West VIP suite. The food was terrific. I wish I knew everyones name I would love to say thank you for the wonderful treatment.

Here are a bunch of photos I took tonight. I hope to add everyone’s names to these when Lou gets them from Laurie!