neurofibromatosis cafe

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

Kevin Nealon Doodles for NF

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May 4, 2009 Posted by | neurofibromatosis | 7 Comments

It’s time for Doodle Day USA benefitting neurofibromatosis!

Reggie Bibbs

SEE ALL CELEBRITY DOODLES AT DOODLE DAY USA

Reggie Bibbs is a highly inspirational man living in Houston, Texas. He was born with neurofibromatosis (NF), a genetic disease which causes him to develop tumors on his body. NF can be a subtle disease, but in Reggie’s case it has left him with a disfigured face. After years of public frustration, he launched a unique one-man campaign to call attention to this disease.

“I have neurofibromatosis. It’s a disorder that causes tumors to grow along my nervous system. In my case, it’s fairly disfiguring. When I would go out in public, people would stare or, worse, walk away. So I came up with an idea for a t-shirt and the rest, as they say, is history.”

With the help of a friend at a local advertising agency, Reggie Bibbs created a t-shirt that would invite people to come up and talk to him about his disorder. “I figured the more they knew about my disease, the more they would understand me.”

“When Reggie called me with the idea for a t-shirt that read, ‘Just Ask’, I literally had tears in my eyes, said long-time friend Lou Congelio, president of STANANDLOU Advertising. The idea was so simple and so powerful that I immediately offered him a position in the company.”

The t-shirt features on the front an abstract outline of Reggie’s face and, on the back, large type that simply says,’JUST ASK!’. Also included on the back is the url for Reggie’s website, www.reggiebibbs.com.

Today, Reggie is also on MySpace and Facebook and has an online store on his website. He’s been interviewed by Wikinews too.

Earlier this year, STANANDLOU and Reggie won 2 Gold ADDY Awards, one silver ADDY, and a Special Judges Award for Public Service Adversiting for their new “Just Ask” ads!

Reggie said, “I am thankful that the work here on the Just Ask campaign is getting noticed. More people will learn about NF as we keep pushing forward. Thank you all for supporting the site with your visits.”

On April 14, 2009, the Just Ask Foundation became exempt from Federal income tax under section 501(c)(3) of the Internal Revenue code.

To learn more about NF and Reggie, visit Reggie’s award-winning website and join him and his friends at the Neurofibromatosis Cafe.

Mari Garcia

Webmaster

Gillian Andersen Website

April 26, 2009 Posted by | Fundraising, neurofibromatosis | , | 40 Comments

Houston Roller Derby this Saturday!!!!

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April 16, 2009 Posted by | neurofibromatosis | , , , , | 6 Comments

Houston Roller Derby Crawfish Boil, Sat, 4/4/09

Crawfish_HRDFlyer.pdfThis is going to be a lot of fun!

Come early, stay late!

All the Derby Girls will be there!

Bomb-A-Betty!

Dunk a Dementia!

April 3, 2009 Posted by | Houston Roller Derby | , | 17 Comments

Lou interviews Reggie about the LA trip

p1040773-11. Why did you go to Hollywood? My picture was in Greg Gorman’s book. A friend of Greg’s saw my photo.

Did somebody invite you? The Annenberg Space For Photography invited me out to a private party the evening before the opening.

What did they want to do? It was actually The Inaugural Exhibit. 8 LA Photographers John Baldessari, Carolyn Cole, Greg Gorman. Lauren Greenfield, Douglas Kirkland, Catherine Opie, Tim Street-Porter, Julius Schulman, Lawrence Ho, Kirk McKoy, Genaro Molina. Greg wanted me there to meet some of the photographers.  PHOTOS Continue reading

March 29, 2009 Posted by | neurofibromatosis | , , , , , , , , , | 48 Comments

Reggie in L.A.

3387792827_c17ec5bcc8p1040770-1audrey-wells0759Just talked with Reggie and he had a phenomenal time at the book signing event last night thanks to Greg Gorman. Reggie  said he met a lot of great people and took a lot of photos. He’s  going to try to email me one or two to put on the site until he gets back. PHOTOS

In any event, if you were at the party on Wednesday, please leave a comment so we can live vicariously through Reggie’s amazing life!

Top photo: Me and photographer,

Middle: Me, Christopher Atkins (Blue Lagoon) and Scott Dickson

Lower: Me and Audrey Wells (Director: Under the Tuscan Sun).

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March 26, 2009 Posted by | Appearances, Fun, Greg Gorman, neurofibromatosis | , , , | 22 Comments

Houston Dynamo Cheerleaders Pay Homage to their Leader!

3361123412_24ce8f8943_oI hate it, just because I’m good-looking and have the body of a Greek God, women feel like they can just come up to me and ask for a photo!

Luckily for them, I had a few minutes to spare and tried to make their day.

I was at a Houston Dynamo Kick-Off Luncheon yesterday where the players were introduced and the cheerleaders kind of hung out.

In any event, it  was fun but next time I’m going incognito.

March 17, 2009 Posted by | neurofibromatosis | 34 Comments

“Dear Congressman, we need money for NF research!”

3273717777_fbd42738b0_bFriends and Colleagues –

As you may know I go to DC every year to ask Texas congressman to sign on to the below letter. Please help further these efforts by going onto http://www.congress.org/congressorg/officials/congress/?district=26&lvl=C&azip= 1) TYPE in your zip 2) get your congressman’s email (left side/ federal) 3) forward on the following letter (cut and paste).

It’s that simple – Again – this will help us get our 20 mill. for NF research. Each year we get closer and closer to a treatment for NF. Please help continue this process by taking 5 min. out or your time to write. Continue reading

March 16, 2009 Posted by | neurofibromatosis, Research, Texas NF Foundation | , , , , | 7 Comments

Need a caption! Win a t-shirt!!!

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March 13, 2009 Posted by | neurofibromatosis | , , | 26 Comments

Last Night at PJ’s!

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My New Friends, Tony and Jenny!
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My friend Carmen Geddit of the Houston Roller Derby.

At left are new friends I met last night, Tony and Jenny.

The other couple I have known for years, Carmen and James.

My new friends just came over and sat next to Lou and me. Never bringing up the subject of what happened to me.  Lots of times it is no longer a subject.  Lou and I brought up the fact that I have Neurofibromatosis. They were so understanding and kind.

I feel great that I no longer stay home in fear of what someone will say to me.  It I felt that way,  I would have missed out on meeting the great people I have met last night and in the last few years.  My life has finally begun. I didn’t give people a chance before. This is why I started Just Ask, to encourage others that have NF to live life to the fullest. I’m doing it and I encourage them as well.  We can support one another in everything we do.

February 20, 2009 Posted by | neurofibromatosis, PJ's | , , , | 19 Comments

They call me “Four-Eyes!”

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January 20, 2009 Posted by | neurofibromatosis | | 28 Comments

Dr. Packer Video from Carolyn Farb Endowed Lecture Series at M.D. Andersen Cancer Center

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The Carolyn Farb Endowed Lecture in Neurofibromatosis.

“Molecularly-driven Clinical Trials for Children and Young Adults with NF1″

Speaker: Roger Packer, M.D.

Executive Director and Chariman, Dept. of Neurology, Childrens’ National Medical Center, Washington, DC

WATCH VIDEO

January 15, 2009 Posted by | neurofibromatosis | | 13 Comments

My new Friend, Ed Port, needs your help.

11212008-wdl-port-dFrom: Ed Port <gbg@ameritech.net>
Date: December 27, 2008 2:56:15 AM CST
To: reggie@reggiebibbs.com
Subject: Hello Reggie from Ed Port
Reply-To: gbg@ameritech.net

Thank you for the e-mail MIke forward it to me. How did yo hear about my story?  I fist saw you on the O about a year ago when I was flipping thou the TV chs   Mike has been trying to help me get my story out.  I ws chatting with friend today on yahoo that lives in  Romania who said he would put my website on his blog to help to get the word out and to help rasie funds.

I would like your imput on anything that would help make the website better.  I wike your store very much it would great to speak to you

http://www.edneedsamiracle.com/

Ed Port

Youngstown Ohio Continue reading

December 27, 2008 Posted by | Awareness, Benefit, Friends, Medical Resources, neurofibromatosis, NF1 | , , , , , | 67 Comments

Just in time for Christmas – Just Ask! Hats!

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December 11, 2008 Posted by | neurofibromatosis | 37 Comments

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.

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

Reggie Meets Kevin and Susan Nealon in LA!

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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

Donate the easy way! Go to igive.com, connect to your favorite online sites, buy stuff and they’ll donate 2% to NF!

Dear Friends,

I have been  made aware recently of this great site that contributes money to your favorite cause every time you go their site to buy your favorite brands online. If you currently buy music on iTunes, books from Amazon, videos from Netflix, office supplies from Staples,or one of a million things,  you might want to look into this! It’s a great, easy way to raise money for neurofibromatosis research, and it doesn’t cost anyone a dime! Please take a look if you could.

Thanks, Reggie

More Supporters Mean More Donations for Neurofibromatosis .

Send an invitation and tell your friends about this free, easy way to support your cause! The $50,000 Surfathon Sweepstakes makes now an even better time for friends to join, since every visit to an iGive store means another chance for your cause to win a prize this month! (Click here for rules.)

We’ll also donate an extra $5 to your friend’s favorite charity when they make their first purchase within 45 days of joining. Send them your personalized referral link and Neurofibromatosis will be pre-selected to benefit! Those $5 donations can really add up – so start inviting!

Here’s your personalized iGive referral link. You can use this link in your e-mail signature line, on your Facebook or MySpace page, or on your personal website/blog to recruit new supporters. Be sure to copy/paste the entire link:

http://www.iGive.com/welcome/warmwelcome.cfm?c=46460&m=566419

October 19, 2008 Posted by | Fundraising, neurofibromatosis | , , | 23 Comments

NEW “Just Ask!” T-shirt Option

The votes are in! Our initial order of tshirts will be the small Just Ask! design on the front and Reggie’s face on the back with the url over his head. (SEE GREEN SHIRTS IN UPPER LEFT.) Our initial order will be pink/white and mustard yellow/blue. We will order in a variety of sizes. If we can order a lot of different colors we will although it might turn into a nightmare trying to keep everything in stock!

If you are interested in ordering a shirt or shirts, please let us know now if possible so we havce an idea of how many to order. I’ve already taken the liberty of putting Emily down for a dozen pink and a dozen yellow. In any event, if you could give us an idea of what or how many you’d like, that would be great! Just leave a comment below or email Reggie at reggie@reggiebibbs.com.

Thanks everyone! Oh, the shirts will be $15 and all cotton so they will breathe nicely!

October 10, 2008 Posted by | Fun, neurofibromatosis, T-shirts | , , | 34 Comments

ABC News Links to Reggie’s Site!

http://blogs.abcnews.com/politicalpunch/2008/10/doodles-of-drea.html

Jake Tapper is ABC News’ Senior National Correspondent based in the network’s Washington bureau. He writes about politics and popular culture and covers a range of national stories.

Doodles of Dreams

October 07, 2008 12:33 PM

Do you remember last year when Sen. Barack Obama, D-Ill., donated a doodle for an auction to benefit Neurofibromatosis, Inc. and epilepsy research? The doodle, of some of his Senate colleagues, sold for more than $2,000 on eBay.

Now we have a doodle from another campaign 2008 rock star, Alaska Gov. Sarah Palin.

New Republic senior editor Noam Scheiber went up to Alaska to profile the governor and during a visit with Palin’s former colleague on the city council, Laura Chase, found this document — the  back of a Wasilla city budget which Palin doodled on in 1996 as she plotted her mayoral campaign.

She makes notes on slogans: “You would be my boss! No tax increase! … Wasilla needs a conservative choice in leadership.”

She makes notes on her resume: “Life Long Alaskan; Graduate: Wasilla High School, Univ. of Idaho (Bach. In Journalism, minor Politics); Wife, mother of three, Homeowners, Businesswoman, TAXPAYER!;…NRA supporter,” “taxpayer!”

There’s a close-up scan of the document HERE.

** Continue reading

October 7, 2008 Posted by | abc news, neurofibromatosis, nf inc | , , , , , | 4 Comments

New “Just Ask!” T-shirt Design

We are thinking of redesigning the shirts so they are simpler, more fun, and are equally appealing to men and women.

We have two styles we’re looking at – distressed and/or solid colors. We’re also investigating different colors for the shirts.

Which design do you like? What colors would you prefer?

Let us know below and who knows, you just might see the shirt of your dreams up here in a few days!

October 7, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis, T-shirts | , , | 20 Comments

Shiner – “Sit” Video

Reggie and his trusty sidekick, Shiner!

Vodpod videos no longer available.

more about “Shiner – “Sit”“, posted with vodpod

October 6, 2008 Posted by | neurofibromatosis | , , , | 8 Comments

Shiner – “Fetch” Video

Reggie and his trusty sidekick, Shiner!

Vodpod videos no longer available.

more about "Shiner – "Fetch" Video", posted with vodpod

October 6, 2008 Posted by | neurofibromatosis | 3 Comments

Mr. DeMille, I’m ready for my close-up!

October 4, 2008 Posted by | Friends, Fun, neurofibromatosis, shiner | , , , | 4 Comments

Psych Ward Sirens #1 in our Hearts!

Last night’s Houston Roller Derby championship bout between the Psych Ward Sirens and the Bayou City Bosses was one for the ages! I thought the Sirens just might pull it out in the end but with 45 seconds left in the bout, two Sirens were in the penalty box allowing Death by Chocolate to run out the clock.

Both teams rocked last night! Although the Sirens may not of won, they certainly came out as winners. I’ve never seen more heart and passion in a sport than what I saw last night.  I think Mistilla the Killa gave Holla-Pain-Yo a complex last night! Every time I looked up, Mistilla was introducing Holla-Pain-Yo to the floor. And Carmen Geddit was steady as a rock!!! All night long. Never giving up. Incredible performance! Jekyll & Heidi had an incredible jam in the first half helping to keep the score close. Congratulations to the Bosses! Both teams played their hearts out.

PHOTOS

September 29, 2008 Posted by | neurofibromatosis | , , , , , , , , , , | 6 Comments

THURSDAY NIGHT AT LOU’S, 9/25/08

Video #1 The Photos Video #2

September 26, 2008 Posted by | neurofibromatosis | , , | 4 Comments

The One and Only Amy at PJ’s! 9/25/08

MORE PHOTOS

September 25, 2008 Posted by | neurofibromatosis | 3 Comments

A blog by my friend Rick in England!

Hi Reggie!

I was looking at your blog – I didn’t realise that you were affected by Hurricane Ike! I’m glad that you are OK! You definitely have more interesting weather in Texas than we have in England!   🙂

The roller-derby looked very cool! That’s when everybody wears roller-skates, right?

I will ask a friend to take a photograph of me wearing my Just Ask shirt tomorrow!   🙂

The NF Camp For All looks totally cool! What types of activities did you do at the camp?

I am still trying to think of the best thing that I could draw for a t-shirt design for your auction or foundation. As you suggested, I could do one-off art for the auction, but I do my art on a computer, so it would have to be a high-quality print-out. Maybe we could print a few and say they are “limited edition prints”?

I have been reading about NF research on the web to get some ideas about a design.

You are a big hero, my friend – you help so many people in such a big way.   🙂

Remember that I mentioned that I have OCD (Obsessive-Compulsive Disorder)? Well, I am going to give a talk to some medical students tomorrow about it, to try to help more people understand about it.

Have a great day!

Your English friend, Rick.

September 24, 2008 Posted by | neurofibromatosis | , , | 9 Comments

Tonight at Beavers in The Heights.

September 19, 2008 Posted by | Friends, Fun, neurofibromatosis | , , , , | 9 Comments

Request from the Texas Neurofibromatosis Foundation

We need your help! We just learned that members of the House and Senate Defense Appropriations Subcommittee will be meeting this weekend to work on the 2009 Defense Appropriations bill.  We need you to contact your members of Congress to inform them of the importance of NF research so we can save the Department of Defense NF Research Program.

Please take the time to call, fax or email your members of Congress.  Ask them to contact Congressmen John Murtha and Bill Young, in the House, and Senators Daniel Inouye and Thad Cochran, in the Senate.  Have your representatives ask Murtha, Young, Inouye, and Cochran to provide $20 million for Neurofibromatosis research through the Army’s NF Research Program in the Fiscal 2009 Department of Defense Appropriations bill.

This is urgent! To find your representatives go to http://www.congress.org.

Thank You,

Texas NF Foundation

Texas NF Foundation is committed to meeting the needs of people challenged with neurofibromatosis by providing care, comfort, support, information, education, funding and other resources for its treatment, prevention and cure.

September 18, 2008 Posted by | neurofibromatosis | | 1 Comment

HURRICAN IKE

Reggie asked me to blog in and let everyone he is ok except that he has no electricity and no internet. But, and I must add, more importantly, I’m ok!!!! I know a lot of people are breathing a sigh of relief and I’m happy to let you know that not only am I alive but I am making a handsome profit selling glasses of water to staring hurricane victims for just $5 a glass. Hey, it’s a national disaster, we all need to do our part

More Photos

September 15, 2008 Posted by | neurofibromatosis | 8 Comments