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

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.

PHOTO BY SCOTT DICKSON, LOS ANGELES, CA

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In this photo you see me goofing around a little. This was a different trip for me. It was special in many ways. My friend Scott Dickson, who lives in Manhattan Beach California invited me  for a visit.  We went in the mountains. Kings Canyon. I’ve never seen anything as beautiful as the Redwoods, and the mountains.  There was snow on the ground and trees.  If you haven’t visit Kings Canyon’s, you must make the trip soon.  It is well worth the time.  We did our best to capture nature’s beauty in the photos, but you just have to be there to really see what it is really like.   The drive was long, with  beautiful  mountains and  lots of fields with growing fruits trees.

I want to say thank you to Scott and his family for making it possible. Scott and Lisa Dickson  have always made me feel welcome in their home.  Also Lou called and gave me lots of encouragement.  He reminded me of something that I needed to hear at that time. He said I was strong.  I was bothered at the time, but didn’t tell Lou. But it was like he knew. He spoke the words when I needed to hear them.  He doesn’t know, but what he told me helped me. Thanks Lou.

Not to forget about Steve Bass, my transportation to and from the airport, which was a big help to me.  Enjoyed the conversation.  I’m excited about your involvement and for wanting to be more involved with  Just Ask. Thanks for wanting to help!

PHOTOS

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. Read the rest of this entry »

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