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

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.

Hello, everyone! Well, it’s that time of year again. This Sunday I will be joining NF, Inc. in Washington, DC  to represent individuals affected by NF and advocate for continued and increased federal funding of NF Research. A delegation of NF  representatives from organizations across the country,  will be visiting our Representatives and Senators. They will receive a packet of information describing our requests, and we would like to include personal stories from those who live with NF. We encourage you to send your personal story about how NF impacts you or your family, and how important federally funded research is to you. All stories will be hand delivered in Washington. Please include your name and address on your letter, and fax your letter to (630) 627-1117 or email to kbischoff@nfinc.org

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

Last week, we got the surprise of our life when a casting agent from Los Angeles called Reggie to see if he would be interested in posing for some photos for some guy named Nikki Sixx of Motley Crue. She said the photos would be for an upcoming book and/or gallery show.

Reggie and I talked about it and we talked to Nikki’s personal assistant, Sara, and it sounded like a great idea. Reggie and I would go to LA. I would bring my 35mm and a video camera and I would document the session while Reggie was photographed. Nikki agreed to be interviewed with Reggie on camera for use on Reggie’s website then he asked if he could interview Reggie. He sounds like a great guy and I know Reggie is very excited about the whole trip.

For those of you unfamiliar with Nikki Sixx, here is some info I pulled off the web as well as his photos from his MySpace page.

Nikki Sixx (born Frank Carlton Serafino Feranna, Jr., December 11, 1958) is an American bassist, author, photographer, and the main songwriter for the heavy metal band Mötley Crüe. He has also played bass for glam metal band London, the experimental band 58, the hard rock band Brides of Destruction and more recently, Sixx:A.M.

NIKKI SIXX TAKES UP PHOTOGRAPHY AND HINTS AT SIXX:AM RELEASE DATE:

April 29, 2009

Motley Crue and Sixx:AM bassist Nikki Sixx has posted the following update:

“Being back in Los Angeles allows many things, first and foremost to be with my family. But the one difference on a creative level from touring is having my creative workspace to build the impossible. I always love when I can pull outta thin air a song, book, design etc, but mostly lately it’s been all about my photography. I’ve done about six full shoots and six smaller still-life shoots as well. I’ve displayed some of it on my MySpace (www.myspace.com/nikkisixx) under ‘Nikki Sixx Photography,’ but by no means comes even close to what I have created or have plans for as a photographer. I’m using all digital at this time, most notably the Hasselblad H3D-39 and the Nikon D3. Both wonderful animals with completely different views on the madness that pours outta my head.

Rosemary Anderson, Grace Hanlon and Reggie Bibbs.

Dear NF friends,

A month ago I announced Phase 2 of the Neuropathy Rx trials.  There are still plenty of openings in the trial.  If you attempted to contact Patty Hall and got no reply, please email back to me, and I will pass on your information to her.  Some emails did not get through.

Here’s my original announcement again -

Rosemary Anderson
President
NF, Inc. Michigan
NF Support Group of West Michigan
nfwestmich@aol.com
616-451-3699

Last year we helped recruit patients for an informal study of the nutritional supplement, Neuropathy Rx, for possible benefits in reducing the size of neurofibromas and preventing the development of new tumors.  Read about the product at www.neuropathysolutions.com.

Testimonial Video

Results from the initial study were very promising, so a second, more formal, study for NF1 patients is being undertaken.  The research nurse in charge of signing up participants is Patty Hall, RN.  She has written to me:

<< Here are the qualifications for the study we’re starting on Oct 1, so if you could get the word out that I’m looking for 60 patients to follow on supplement or placebo, I would appreciate it. Any interested patients can contact me at 616-826-4033 or through email at patty@terraceuticals.com. (more…)

PHOTOS

William, John AuCoin and I went to the Alabama Ice House last night to listen to the Flaming Hellcats. William had his Just Ask! hat on and I had my Just Ask! tshirt on when all of a sudden, I thought I heard someone say, “Ask you about what?” When I turned around I saw this young woman who seemed quite interested in me, or, more importantly my tshirt.

I told her the story about Reggie and how he had this idea to print tshirts so people would feel comfortable coming up to him and asking about his disorder and the fact that we had an actual 501c3 designation for the Just Ask! Foundation. (more…)

All Photos

What can I say? Last night was the time of my life.  We went to see Colin Hay, of “Men at Work,” at the Dosey Doe in the Woodlands. Thanks to my friend, Matt Jones, for talking the time and effort to make this meeting happen. For someone as famous as Colin to take the time to meet and talk to me, was the best thing that ever happened to me. And for him to mention my name before he sang my favorite song, “Waiting for my real life to begin,”was incredible.  What more can anyone ask for.  Colin talked to me for a long peroid of time. And he made me feel like I’ve known him for years.   His new hit “California” is terrific! I know I’m going to support Collin Hay as he is supporting JUST  ASK! by wearing my shirt to help spread awareness for nf. I hope anyone that has nf will support Collin as he is helping support nf. Buy his cd’s!

(From left to right) John Person, William Hughes, Geo Austin, Marla Hill, Clive Hill, Matt Jones, Colin Hay, Colin’s Tour Manager Ace, Reggie Bibbs, Julie Stewart, Tim Drysdale, Karen Daly, Stephen Daly, Lou Congelio.

LYRICS TO WAITING FOR MY REAL LIFE TO BEGIN  – Colin Hay (more…)