neurofibromatosis cafe

A place to talk about NF, have fun and share.

Reggie Bibbs as photographed by, the one and only, Greg Gorman

reggie_o4d8694-copyPhotographer: Greg Gorman

Reggie is currently on vacation in Los Angeles visiting with his new friend, Scott Dickson and his family. While in LA, Reggie had the opportunity of visiting with old friend, Greg Gorman. Greg is an internationally known photographer known for his stark, vivid images of the famous and not-so-famous.

Greg has been an important part of Reggie’s life since being introduced to Reggie by Houston socialite, Carolyn Farb.

Reggie has been featured in Greg’s books and showings.

Advertisements

November 14, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis | , , , | 4 Comments

Reggie Meets Kevin and Susan Nealon in LA!

p1040197p10401941p10401951p10401961

Reggie with Susan and Kevin Nealon and Scott Dickson in LA.

See more photos at Reggie’s Flickr account here!

November 14, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis | , , , , , | 3 Comments

The New Shirts are In!!!

3027670506_41e6aa8baa_b3026837609_2da074d105_b

November 13, 2008 Posted by | Awareness, Fun, neurofibromatosis, T-shirts | , , | Leave a comment

National Doodle Day Benefiting Neurofibromatosis

main-2.jpgmain.jpg

I spoke with Mari Garcia administrator of Gillian Anderson’s Official Web Site, I was asked sometime ago to help out and to contribute a doodle for NF, Inc’s Second National Doodle Day Auction. I was happy to post a blog and do what I can to be of help. Please check out the links and see your favorite Actors and actress and others who have support the fight against NF.

The auction will start on May 8 on eBay. So far there are two pages and more doodles will be added as they come in. Be sure and blog your favorite doodle.

NF, Inc. is raising money for neurofibromatosis through their annual National Doodle Day! As part of NF Awareness month, celebrity doodles will be available for auction on eBay.

These doodles have a very important aim: the funds they raise will benefit NF, Inc., an organization dedicated to providing support to individuals and families affected by neurofibromatosis (NF).doodle.jpg

Neurofibromatosis is a genetic disorder that affects one in every 2,500 births. NF is more common than Cystic Fibrosis, Muscular Dystrophy and Huntington’s Disease combined. Funds raised from the Doodle Day auction will go to support education, advocacy, coalitions, and research for treatments and a cure.

To learn more about NF, please visit http://www.nfinc.org.
For more information about National Doodle Day, contact email doodleday@nfinc.org

View celebrity doodles

March 6, 2008 Posted by | Appearances, Awareness, Benefit, Celebrity, CTF.ORG, Facebook, Friends, Friends of NF, Houston Texans, national doodle day, NF1, NF2 | , , , | 62 Comments

Friends of Neurofibromatosis Group on Facebook

Dr. RiccardiTo all my friends who are reading this blog, I’d like to introduce you to my “Friends of Neurofibromatosis” group on Face Book. We have quite a few members now, over 70. I am now in contact with a few good friends that I had lost contact with from the 1980s. My friend Dr. Vincent “Vic” Riccardi is now part of our “Friends of Neurofibromatosis” group. I’m sure anyone who has NF may know him or have heard of him. Dr. Riccardi is a legend when it comes to neurofibromatosis research and treatment. He has not only been a good doctor, but a good friend. He has done a lot for NF. At one time he was on the Board of the Texas Neurofibromatosis Foundation. He was its Medical Director for many years helping decide where to give the money we raised for research. Hopefully, maybe we could get him to come to the blog from time to time.

n71001931_31763618_8129.jpgTwo other friends have showed up too! Megan Phillips and Andy Ganster are now online with us. Megan, Andy and I shot some TV commercials with Lou back in 1989. That’s when we first met Lou through Bob Hopkins, then the TNF Executive Director. Those were some pretty serious commercials but they helped neurofibromatosis get some much needed awareness.Andy Ganster

I hope anyone visiting this blog will also join us on Facebook as well. We will all learn as we go alone on Facebook. The games and quizzes are fun and challenge. It a good way to find friend you may have lost contact with. Believe me, I know!

Here is the link!

February 20, 2008 Posted by | Awareness, Facebook, Friends of NF, Friends with NF, Fun, neurofibromatosis | , , , , , , | 315 Comments