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

Some friendsand and I went to see Kevin Nealon at the Improv last night. Click on the link, valt then photo. Check out the photos on his website, as well as the photos of my facebook, and flickr page.  I met Kevin a fews years ago in California, when visting my friend Scott. That is how I met Kevin. I’ve been friends with Kevin 3 years after that day. Kevin contact me to say he would be in Houston, and he would like for me to come see him. We did, and he really made me happy, as he did the same for my friends.

This is what Kevin did for me.  He wore my just ask shirt on stage. He gave me free tickets. He talk to me after the show, Was not in a rush to leave. He posed for photos with me. He collect lots of doodles for National Doodle Day.

Joan Rivers, Jane Leeves, Wendie Malick, Jon Lovitz, Valerie Bertinelli, Garry Shandling, Roseanne Barr, and of course Kevin Nealon.   And Kevin gave me this medallion. It was given to him by Brad Paisley. It reads Expect Great Things.  Kevin really made me happy, and Im thinkful for what he is doing for all of us that are affect by NF.

“My Brand New Face”

Click HERE to view teaser!

In many ways Maurice Simpson is just a regular guy who loves his wife and works hard at his job.
But there’s something about Maurice that sets him apart from everybody else.

Since childhood he’s had a massive disfiguring facial tumor caused by Neurofibromatosis. Amazingly, an anonymous donor has offered to pay for surgery – but before the operation he’ll come face to face with Reggie Bibbs, an NF sufferer whose own surgeries were a failure.

With the tumor so deeply fused with Maurice’s head is surgery too much of a risk for a brand new face?

Maurice Simpson is a family man with a giant facial tumor that he’s never let get in the way of a good time. But now it’s putting his life at risk and Maurice has decided to undergo a dangerous operation to risk everything – for a brand new face.

Check your local listings!

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