neurofibromatosis cafe

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

Tax Deductible Donations Now Being Accepted by the Just Ask Foundation

donate_onlineThank you for your interest in helping raise awareness for NF. With your help,  I hope to spread the word about neurofibromatosis through web, viral,  web-related resources, and personal appearances at events throughout the country

Unfortunately due to my not being rich, i.e. poor, I don’t have the financial resources to underwrite all the funding we need to meet my objectives. Thanks to Lou, I have been able to attend all of the functions you see in these photos courtesy of Lou.

I want to raise awareness of neurofibromatosis so that people affected as severely as myself can be accepted into society and lead a “normal” life. That’s why Lou and I and Matt and Geo and William and Shana go out together. When people see other people acting normal around something they don’t understand, they feel ok about it and figure there’s nothing wierd happening and they’re fine. Continue reading

April 17, 2009 Posted by | Awareness, Fundraising, neurofibromatosis, T-shirts | , , , | 5 Comments

Houston Roller Derby this Saturday!!!!

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

Houston Roller Derby Crawfish Boil, 4/4/09

3413862470_227e9d1384_bToday Lo3413850234_cba4562082_bu and I went out to the Houston Roller Derby Crawfish Boil to help support the HRD. We had a great time supporting our friends. They have been really supportive to Neurofibromatosis, I want to help support them for everything they are doing for us. And because they are so wonderful!

I also met a lot of new friends as well.  Everyone I met tonight had the oppertunity to JUST ASK about NF, which is hard to do when at the derby.  This was a great way to spread awareness of NF. Great friends and a very super time. Enjoy the photos we have posted.  Leave comments on the blog and photos as well.

See you at the Roller Derby!

PHOTOS

April 5, 2009 Posted by | Houston Roller Derby, neurofibromatosis | , , , | 109 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

“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

Reggie & Lou Go To The Houston Roller Derby, 3/7/09

Mistilla the Killa and Me!

Mistilla the Killa and Me

Me, Dementia & David Norton, the director of my TV PSA.

Me, Dementia & David Norton, the director of my TV PSA.

PHOTOS

March 8, 2009 Posted by | neurofibromatosis | , , , , | 8 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

An article about my friend, Ed Port, from Youngstown, Ohio!

beyondface_articleBy Denise Dick

A story on the township resident will air on CNN HLN Saturday through Monday.

AUSTINTOWN — Ed Port writes poetry, loves animals and enjoys cooking, but all some people see is his disease.

Neurofibromatosis type 2 causes severe tumors. For Port, 38, the tumors cover the left side of his face, obscuring his facial features and limiting vision in his left eye.

The Vindicator first wrote about Port and his condition in November. He’s since been in touch with plastic surgeons and other doctors and has received donations from a few people. Port has a Web site http://www.edneedsamiracle.com, but he is working to establish a nonprofit corporation to accept donations.

This weekend an interview with Port will air on CNN HLN, formerly Headline News. CNN conducted the interview last month.

A network representative said the show, “News To Me,” will air at 7:30 and 9:30 p.m. Saturday and Sunday and at 12:30 and 5:30 a.m. Sunday and Monday.

“You shoot it, we show it,” the network’s Web site says of the program. “‘News To Me’ is the world as seen through YOUR cameras.”

Vindicator chief photographer Bob Yosay shot the video of a CNN HLN reporter’s interview with Port.

Port hopes to raise awareness about the disease through the publicity. Continue reading

January 30, 2009 Posted by | neurofibromatosis | , , , | 10 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

NEW 2009 “Just Ask!” AD CAMPAIGN!

3113186003_d13b1727a7_oWe are in the last month of 2008. I’m excited for what we are planning for 2009 and the JUST ASK! campaign. We have just designed a new ad campaign with new photos and messages. The photo shoot was donated by professional photographer and friend, Greg Gorman of Los Angles California.

The new ads will be sent as a public service announcement to a variety of publications throughout the country. Also, we have entered them in the American Advertising Federation award show. The ads will compete with ads from all over the country. This is a great thing to happen, whether we win or not, because our message will be seen from people all over the world. Which means, more people will know about NF. The ads are strong and to the point.

In 2009 I look forward to a bright New Year. We will have a new look. We started with the new t-shirt design. The website will be bright as well. I hope that you will join me in making 2009 brighter. We have the same cause. Awareness of Neurofibromatosis.

CLICK TO VIEW ENTIRE CAMPAIGN

December 17, 2008 Posted by | ADDY Awards, Awareness, Blogs, Greg Gorman, Just Ask!, neurofibromatosis, PR, T-shirts | , , | 51 Comments

My friend Scott Dickson and me on Manhattan Beach!

3039660218_02ac401e8f_bThank you Scott for allowing me to be your guest at your home. Lisa, Maeve, and of Course my friend Clive. There is no way I can explain how happy I feel about the way things went for me. 3038818031_8d892c3a34_b

It’s good to be home, but sad to leave the company of my great new friends. Thank you all for your kindness.

November 17, 2008 Posted by | Awareness, Friends, Fun, Just Ask!, neurofibromatosis | , , , | 10 Comments

My friend Francis Boyermadrieres from France

3010703046_f1e2ee6e51_b3010702912_474b0f041b_bDear Reggie
I received to day your tee shirt. I’m very very prud to wear it! I only do it for great events for neurofibromatosis! As you can see It fit me very well. Very sooner I’ll publish in my blog a text about my purchasse. Dis you see my slide shot about the naughty little toad? In this clip I wear a French neurofibromatose tee shirt size M because  the French association own  S tee shirt no more. I hope the sending was not too expensive for you. Kind regards my friend
– Francis

If you would like to email Francis, his address is f.boyermadrieres@laposte.net

November 7, 2008 Posted by | Friends, neurofibromatosis, T-shirt | , , , | 6 Comments

New Just Ask! T-shirt Design – Final!!!

reggieshirt_final_outlines

We have just ordered a new batch of “JUST ASK!” t-shirts! They will be shipped next week and will be available for immediate sale.

The new shirts are 100% cotton, Hanes Beefy Ts, available in 3x,2x, XL, L, M & S. Mustard yellow with distressed dark blue lettering.

$15 All proceeds benefit the Just Ask! Foundation.

To order, click here!

November 6, 2008 Posted by | Fun, neurofibromatosis, tshirt | , , , | 6 Comments

Thank You, Connie And Jaen Lawrence!

3002441017_c08b6e7a41_b1Some of you may have noticed my new photos that I posted today.  Thanks to my friends Connie and Jaen Lawrence, I have a huge new desk, office supplies, printers, faxes and computers. This is just prefect for all of my office needs.  My computer is really fast, and It is a Mac.  I can print, fax, and mail in high volume now of JUST ASK! products you all will 3002238891_593762a525_b1order in the up coming Holiday season. : > )  Plenty of time to order now. Come on keep me busy. I will post photos of how busy you keep me at my office.

See how much desk space I have.  Also I want to thank Lou & Michelle for the office space at StanandLou.

November 4, 2008 Posted by | A MESSAGE FROM REGGIE, Friends, neurofibromatosis | , , , , , , , | 13 Comments

2008 Texas Renaissance Festival, 11/1/08

Reggie, Lou, William and Geo went to one of my favorite places in the world, the Texas Renaissance Festival.

I met a lot of great people like Lisa, Christina, Lewis, Barbara “The Fairy Lady” and saw a lot of old friends including the “Pretzel Guy” and the belly dancers from the International Festival.

The weather was perfect, the entertainment very good, and I had the  BEST DARN steak on a stick I’ve ever had!

Now if there was some way we could go without Lou having to tag along!!!

November 2, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis, TEXAS RENAISSANCE FESTIVAL | , , , | 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

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

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

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

Shiner, My New Dog!

Just got Shiner.   Meet my new dog. Shiner is a great dog and I’m thankful to my new friends Connie and Jaen Lawrence. They helped me with making a great home for my dog. We went to the Pampered Pet Inn. When I saw Shiner he came over to me and laid down.  He was just the dog I wanted.  He’s right next to me as I write. He will be watching TVLAND tonight.

Lets talk pets. What kind do you have. What kind do you want?

September 30, 2008 Posted by | Friends, Fun, neurofibromatosis | , , , | 67 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

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

Met new friends at PJ’s “Pork” Night!!!

Yes, you heard me right, it was “Pork Night” at PJ’s last night. PJ said he didn’t have time to pick up steaks but he had some pork laying around so he did that instead. It was excellent!!!

See all the photos from PJ’s Pork Night and the aftermath party at Lou’s.

Last night was GREAT! I met new friends that made a point to talk to me. It was the top of the night for me. I’m not good with names but thank you for talking to me. I hope to see you again. Email me and when I’m back on line I will reply. Both photos from last night look terrific!

September 19, 2008 Posted by | Friends, neurofibromatosis | , , , | 1 Comment

TEXAS NEUROFIBROMATOSIS CAMP FOR ALL WEEKEND FUN!

Today is September 7th.  Just returned for Camp For All.  If you have never atten The Texas Neurofibromatosis Foundation’s, Camp For All. Trust me. You must attend next year.

I’m feeling really emotional.  Joy and sadness.  I met so many new friends as well reunited with friends from prevouis years.  Some of my friends don’t have NF but attended the camp to support me and have fun.

There are lots of Activities to enjoy.  What I enjoy mose of all.  When a parent or someone that met me on myspace, facebook or the local news, they come to talk to me and just want to talk.  It’s a feeling that I could never express in words.  It’s the greatest support one can ASK for.  For me and the person I have the pleasure of talking to.  It’s like getting a new family member.  And it hurts when it’s time to go home.

The joy is that you can look forward to the next year.   And it gets beter than that. You can keep in contact via email until the next camp. I want to say thank you to all of you for a greak weekend. If you see your photo and you want to add comment please do so. Add you name to it as well in the comment box.  We would like to know ideas you have for nexy year. what you will like to see to make it better. I will pass your ideas to The Texas NF Foundation.

PHOTOS

September 7, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Friend, Friends, Fun, neurofibromatosis, nf, NF1, Texas NF Foundation | , , , | 48 Comments

HOUSTON ROLLER DERBY HONORS REGGIE BIBBS THIS SUNDAY NIGHT! TICKETS ARE GOING FAST, GET YOURS TODAY!!!

Speaking of the roller derby, mark your calendar for August 10 as the Houston Roller Derby honors a certain person on this blog who will remain nameless.

Houston Roller Derby

Sunday, August 10

Doors open at 4pm

Bout starts at 5pm

Verizon Theater

Downtown – Texas at Bagby (LOTS OF STREET PARKING AND THEATER PARKING)

DON’T FORGET TO WEAR YOUR “JUST ASK!” T-SHIRT!!!

Please make plans to attend and wear your Just Ask! t-shirt. Don’t have one, no problem! We hope to be selling them before the match!Advance tickets are just $10 online, $15 at the door!

Come see all of your favorite skaters including Dementia, Mistilla the Killa, Jeckyll & Heidi, Carmen Geddit, Death by Chocolate and more!!!

SPECIAL THANKS TO ALL THE SKATERS, FANS, REFS AND FRIENDS WHO HAVE MADE GOING TO THE ROLLER DERBY EVERY BOUT A WONDERFUL EXPERIENCE! YOU HAVE NO IDEA HOW MUCH THAT IS APPRECIATED!!!

August 7, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis, News | , , , , , , , , | 22 Comments

“Hey big fella, do you have neurofibromatosis or are you just happy to see me?”

CAPTION CONTEST: WIN A JUST ASK! T-SHIRT!

Send us your best caption to this photo via the COMMENT section below, and you could win the first prize of one Just Ask! t-shirt!!!

Second prize is two Just Ask! t-shirts.

PHOTO: (l-r) Reggie Bibbs and the beautiful Carmen Geddit of the Houston Roller Derby.

Speaking of the roller derby, mark your calendar for August 10 as the Houston Roller Derby honors a certain person on this blog who will remain nameless.

Please make plans to attend and wear your Just Ask! t-shirt. Don’t have one, no problem! We hope to be selling them before the match!Advance tickets are just $10 online, $15 at the door!

Come see all of your favorite skaters including Dementia, Mistilla the Killa, Jeckyll & Heidi, Carmen Geddit, Death by Chocolate and more!!!

July 30, 2008 Posted by | Friends, Fun, neurofibromatosis | , , , , , , , | 40 Comments