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

I got the surprise of my life today. Well it shouldn’t have surprised me. Sugar Ray has always been a supporter of my work in JUST ASK.  Sugar Ray wrote me.  He said, he needs a new Just Ask t-shirt, so he can continue to wear my shirt and help spread awareness of neurofibromatosis when he travels to other countries.  This is great to have someone as famous as Sugar Ray Leonard to be involved with making a difference in the  JUST ASK! campaign.  Sugar Ray always ends his notes by calling me the Champ. Sugar Ray is the real Champ!

Thank you Sugar Ray.

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.

It is that time of year again. The Texas NF Foundation, is making it possible for nearly 200 persons to have a great weekend at Camp For All. This weekend will be our yearly camp for persons with nf, along with family and friends. The one time most of us get to see each other. I’m looking forward to horse back riding, Zip line, which I hear is lots of fun. Fishing, petting zoo, and Lots of talking with new and old friends. Also looking forward to sharing with you photos to all who can’t make it to camp this year. Let’s talk about camp this week. What do you look forward to this weekend at Camp For All.

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

Texas has been lobbying since 1997 to ensure that NF research continues to make progress. Since that time, over 200 million has been contributed to NF research programs. Within the last few years, research funds have steadily been decreasing. However, today I am proud to announce that they are “back up!” The House Appropriations Committee just ruled that another 25 million will go towards the 2010 Department of Defense NF Research program. This is a tremendous victory since last years projects only collected 10 million. That’s a 250% increase!
Thanks to all of you for writing your Representatives, It worked! And thanks to Reggie Bibbs, Sandra and Emily Parker, Dr. Slopis and Dr. Moore for taking the time to personally visit Representative Sheila Jackson Lee.
HOWEVER – The 25 MILLION IS NOT SECURED – YET. We still need YOUR HELP to SECURE THESE FUNDS! Please email, or better yet, hand write and fax a personal letter asking that our Senate approve the House Appropriations proposal of 25 million towards NF research. Thanks again, together we are making a difference!

Senator John Cornyn FAX: (202) 228 – 2856
Compose an online letter to Sen. Cornyn
Senator Kay Bailey Hutchison FAX: (202) 224-0776
Compose an online letter to Sen. Hutchison