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

PHOTOS

Tonight was very special as the Discovery Channel was in town filming a documentary about Reggie. Thanks to our dear friends at Saltgrass Steak House, the Psych Ward Sirens and all of our friends at the Houston Roller Derby, for making this an evening Reggie will never forget!

Toni Niece, of Saltgrass Steak House, gave us permission to shoot some interviews at their restaurant on I-10 @ Campbell Road. Thank you, Toni, the restaurant was perfect, the food excellent and the staff incredible! Our waiter, Chris, was outstanding and took wonderful care of us. Also, thank you for the delicious appetizers! That was completely unnecessary but totally appreciated!

Saltgrass Steak House Rocks!

It’s back!

Hot, sweaty roller derby action is back at Kicks and Lou and I are going this Saturday! Sure will miss some of the skaters that retired last year but look forward to meeting the new skaters who are taking their place.

I love Houston Roller Derby! The women who skate are tough on the outside but are the sweetest, most wonderful people on the inside. Every time I go, they make me feel like I’m the most important person in the world!

“Follow the lives of three young individuals who fight against a disease that causes tumors to spread through the body.’”

This is Adgiant talking. Just watched the MTV Special Episode, “I Have NF” and I think it is fantastic. They didn’t try to sensationalize the disorder but instead tried to accurately portray, through the lives of three people, how NF has affected them and how they are dealing with it. Very positive. Very uplifting. Very you gotta watch it!

Here’s the link:

Today, Steve Bass (PHOTO ON LEFT) and I will be traveling to British Columbia, for the NF Canada and BCNF symposium. Steve Bass is the owner of srbservices. and  someone who has been a very good friend, is taking time from is business to help me with my travels. This a tremendous help to me when Steve can juggle things around to make things easy for me.   All of this at his own expense, to help a friend, and the Just Ask Campaign.

The Symposium promises to be exciting. Looking forward to seeing my good friend Dr. Riccardi!  Yes, he will be there, and I will have a tough act to follow. I have to speak after Dr.Riccardi (PHOTO TO THE RIGHT).  Not too worried about it. He refers to me as the secret weapon for nf.  Wow, that means a lot coming from someone like Dr. Riccardi.  Stay tuned as we hope to send photos as we get them.

I need to bring Dr. Riccardi a new gold Just Ask! shirt. It would look great with his tan! I mean just look how good it looks on me!!!

photos

Thought things couldn’t get any better. I found out yesterday things can always get better, Even though you are happy with the way things are going for you now. I Meet a lot of nice people in Austin. Our Austin friends are learning about neurofibromatosis and showing compassion about all who are affected by NF. Shouldn’t surprise me. I always walk away feeling great, as I know the new friends I met feel the same. A big thank you to all who took time to take photos with me! You are all very special to me!

Lou and I went to the rodeo tonight and had an incredible night! The highlight of the evening happened rather early like within the first 15 minutes. Lou noticed a nice lady next to us with a baby and she looked like she needed to smile. So Lou started talking with her and before I know it, she’s asks me if I want to hold her baby. I was so honored and so proud and so appreciative of the unconditional trust that she had in me.

Michelle Hickman, you made my day today! Thank you so very much!

Lou took…like, over 120 photos so click below to see all of the new friends we made tonight. And, also, a special “Thank you!” to the soldiers from Fort Hood that were at the rodeo tonight. You are a credit to our nation!

I salute you!

PHOTOS

A few months back, you may remember the blog asking for your vote so that I could be one of the speakers at  SXSW.  Well, your vote worked because I will be one of the speakers this weekend.  Lou and I head out to Austin Saturday to check in and scope out the place.  Then, on Sunday around noon, I will share with the panel how I utilized the internet via my website, blog, and Flickr, YouTube and other resources on the internet to spread awareness of neurofibromatosis. It would be great to see you there.  All the information you need, if you would like to attend, is here. Look forward to seeing you. If you live in Austin, definitely send me a message!

By the way, I did NOT write the title of the panel!

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.

Great news, everyone! We just found out that Reggie has been accepted to speak at the SXSW!! Thank you, EVERYONE, for your online votong and great support, especially Jason McElweenie who started this whole thing!!! Way to go, Jason!

Here is the page that lists Reggie’s topic http://sxsw.com/interactive/talks/panels Here’s what they sent us:

Dear Reggie Bibbs,

Greetings and congratulations!

This e-mail pertains to this proposal that you submitted to the SXSW PanelPicker:

“Becoming An Inspiration – One Pixel At A Time”

PLEASE READ THIS ENTIRE E-MAIL CAREFULLY BEFORE YOU TWEET, ETC

We really like your proposal — and it scored well with the general public voting as well as with the Advisory Board. To this end, we would like this to be a “Core Conversation” at the 2010 event. We received more than than 2300 outstanding proposals via the SXSW PanelPicker — so being selected for the event means that your idea represents the best of the best of the best. Congrats!! And, thanks again for putting together such a great proposal.

To your most basic question . .. what is a Core Conversation? We started doing these in 2008 and they have proven to be immensely popular with SXSW attendees. Core Conversations occur in slightly smaller rooms than do panels. Moreover, these sessions involve a lot more interactivity than the more traditional panel format. So, if the traditional panel format involves presenting an expert’s information to the audience, then the Core Conversation involves leading the audience in a discussion on the topic at hand. Given this is a discussion, Core Conversation rooms do NOT include AV equipment such as a computer or a projection screen — these sessions are creative people sharing their ideas with other creative people, as opposed to passively watching a presentation. We repeat — Core Conversation rooms do NOT include AV equipment.

We look forward to receiving your reply / confirmation as soon as possible. If you do not confirm before 1:00 pm CST on Monday, November 30, then your proposal probably won’t make it onto the web post for Tuesday, December 1.

After we receive your reply / confirmation, we will begin the process of sending you lots and lots more information about your speaking slot at SXSW.

As for questions, we know that you probably have tons of these. We will be sending you lots of information about SXSW as soon as you confirm your participation — and we believe this information will answer most of your questions. But, if you need an answer immediately, that is what we are here for.

Once again, congratulations on being selected as part of the 2010 SXSW Interactive Festival! Also, thanks for bearing with us on this form letter. We promise that future communications will be more personalized!

Best regards,

Hugh Forrest
SXSW Interactive Festival
March 12-16, 2010
Austin, Texas

http://www.sxsw.com/interactive