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

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

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.

Recently, I shipped a Just Ask t-shirt to Gabriele, a new friend, who lives in Germany. I want to share her message,  But first I want to say, I am impressed that someone from as far as away as Germany took time to write such a nice message and also order a JUST ASK T-SHIRT.  Now!  that is a cool feeling.  Someone supporting what I do to bring awareness to nf.  Gabriele writes…..

“Hello Reggie, I´ve written you a note just a few minutes ago- but before I got the chance to finish it, I hit the “submit-button” by accident. To make shure you receive it all, I´ll start all over again. I´ ve seen a video with you and Oprah on you tube. I found it very touching and think you are very courageous. I was born with NF too and since the right side of my face was damaged I had operations since I was 3 years old. Now I am almost 45 and ´ve been leading a normal live. My parents gave me a lot of courage on my way- thats why NF couldn´t stop me from doing anything. I have to admit that there was no chance for me to become a model but I am a few inches to short anyway I wish there where more people like you- letting the public know that a face isn´t a vital organ. That people like us have a brain and a heart and   are liveable and loveable beings. One of my reasons to write you was that I wanted to order a “Just Ask” T-shirt. In the meantime I´ve found the link on your homepage. The other reason was that I wanted to tell you “Keep going” … well- there is still so much I would like to say, but I better write a book… A book? Why not…. I hope you had a nice x-mas and want to wish you a happy new year Gaby, from Munich Germany

Dear Friends,

2009 was an amazing year!

We are making a difference in the lives of those who are affected by NF.  Every person who reads this blog, every person who watches our videos or looks at our photos on Flickr or who comments on Facebook is telling people with NF that they care.

Our web stats show that we have visitors from every country in the world.  Visitors have viewed our photos over 400,000 times. Our total video views exceed 100,000 views. NF groups around the country are finding out about us and want to be a part. We are being invited to speak at NF functions around the country and Canada. Thanks to our many friends across the web, Just Ask as been asked to speak at the SXSW Interactive conference in Austin in March.

We have visited so many places and made so many new friends that I know will last a lifetime! There are so many wonderful, kind-hearted people out there that I wanted to be sure to mention them and remind them how much I love them. The Houston Roller Derby. The Houston Texan Cheerleaders. All of the cast and crew and visitors at the Texas Renaissance Festival. The belly-dancers at the Houston International Festival. All my dear friends at the Art Car Parade. Steak Nite at PJ’s Sports Bar on West Gray. Music Night at Lou’s. The list is just too long to include everyone!

I am so proud to say that “Just Ask!” is doing just what we hoped for when we created it many years ago, to create awareness of neurofibromatosis by inviting people to just ask about our disease. We accomplish this by going out in public and inviting people to talk with us, to establish a dialogue and letting them know that it’s ok to ask about our bumps and to give a damn.

With the help of friends working behind the scenes, we are able to make this happen. William, Matt, Geo, John, Mark, Bill, Michelle LebLanc and Lou and the rest of the staff at STANANDLOU, Greg Gorman, Scott Dickson, Steve Bass, the Houston Roller Derby, Sugar Ray Leonard, Kevin Nealon…the list goes on and on! Every person who visits the site deserves the credit for making “Just Ask!” an organization that is making a difference. This could not happen without those special friends working as hard as they work everyday.

2010 will also be a great year.  Thank you all for playing such a huge role in the website, blog, Facebook, YouTube, Flickr, Vimeo, Wikipedia and all of our other web resources. Please visit often, tell your friends, and be a part for the great things  that are in store in 2010! Your support and comments are what makes us successful!!! Thank you so much!

Make it a tremendous day,

Reggie

Ok,  I’m sure you are all wondering, what in the world is Reggie Bibbs up to now? No? Well. I’ll tell you anyway. My friend Lou was contacted by someone who was wanting to get in contact with me.  Denise was finally able to get a email to me. Read the following.

“Okay, here’s the deal. I’m replicating a high end fashion catalogue that’s all a beach scene (no water- photographed in a studio and heavily airbrushed). All of my models will be people with different visible signs of trauma, illness, birth defect, etc. I’m playing with the ideas of illusion and fantasy (fashion) and what it leaves out and also the desire to be seen for who we are, concerns for “normal” and more. The main photo will be heavily retouched and heightened to give it the more perfect than life feel of advertising and the other photos.

I haven’t got the Missoni pants in the mail yet. I assume I’d end up cutting the back of the pants leg to get it on- it won’t be in the photo- although potentially it could in the photos after the main one. We could find a way for this to work. I’m sure of it. I often pin things that are too big or cut things that are too small. I also might be able to go buy a pair in your size. Let me know tonight when you get a chance if you can.”  — Denise Prince

That was the email.  Everything has been worked out.  We head out to Austin on Monday. My friend Steve Bass of srbservices.  will take time out his busy schedule to drive for me.  I’m thankful for that.

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.

Neurofibromatosis can cause variety of effects. Skin disfigurement only one symptom of congenital disorder

Published Wednesday December 2nd, 2009

By Sheryl Ubelacker
THE CANADIAN PRESS

TORONTO – Bob Bingham settles back in his leather easy chair and agrees he’s a man who’s comfortable in his own skin.

Enlarge Photo

The Canadian Press

Reggie Bibbs, 45, of Houston has a severe form of neurofibromatosis. Through his ‘Just Ask’ campaign and his website (www.reggiebibbs.com), he uses his disfigured appearance to raise awareness of the congenital disorder.

That might come as a surprise to some, for the topography of Bingham’s skin is anything but smooth. He has hundreds of lumps and bumps ranging over his body, from a smattering on his face and neck, to tightly packed clusters on his chest and back.

Benign tumours that form in the sheath surrounding nerve tissue, they are but one possible manifestation of a little-known genetic condition called neurofibromatosis, or NF.

“If I was walking down the street, you wouldn’t notice it,” says Bingham, 72, of Toronto. “But some of our people, their faces are very badly marked, like you would see them coming from several blocks away.” Read the rest of this entry »

ALL PHOTOS!

Well, I almost missed out on a well needed lift in spirit.  After not feeling in such a good way, my friend Lou called me ans ask me to go to the Renaissance Festival again this year. Thanks to Lou and all of my friends I met today, gave me something to bring that smile that my friends tell me they like to see.  If if were not for my friend talking me, I would have missed meeting all the wonderful people that made me happy. All of you that I met today, I hope to see your comment on my blog, as well as enjoy all the photos, while you are learning about NF.  Thanks and see you on the blog.