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 Rocked Last Night!

3455612059_99d01f17ca_b3455545491_a95cd098c6_bMistilla and Carmen Geddit were awesome last night! They were the last two jams of the night with the Psych Ward Sirens down by 10 or so points. What they did in the last two minutes of the match reminded me what Eli Manning did in the last 3456355096_91efa1b1f7two minutes of the Super Bowl a couple of years ago. They brought their team back with poise, concentration, talent and heart!!! What a finish!!!!

ALL PHOTOS

April 19, 2009 Posted by | Houston Roller Derby, neurofibromatosis | 66 Comments

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

JUST ASK FOUNDATION is now a 501c3!

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We just received terrific news from the Internal Revenue Service.  The IRS has determined that the Just Ask Foundation is exempt from Federal income tax under section 501 (c) (3) of the Internal Revenue code!!!

This is extremely important to the future of the Just Ask!  Foundation because now contributions to the Just Ask! Foundation are deductible under section 170 of the code. We are also qualified to receive tax deductible bequests and gifts. We don’t have to rely on t-shirt sales to keep the website going or to fund our speaking engagements.

This is what we have been working on since last year.  Thank goodness: mission complete.  This wouldn’t have been possible without the tireless efforts of William Hughes, a friend of mine and Lou’s, who also happens to be on the board of the Just Ask! Foundation. William was the point person on dealing wtih the IRS and all the government agencies involved to get this special designation.

Also, none of this would have been possible without the generous support of Michelle Reed of STANANDLOU Advertising who donated the fees necessary to apply for the 501c3 status. Thank you so much, Michelle!

Thanks to William and Michelle, we will be able to raise money through donations, grants, foundations, fund-raising events, etc. and pay no taxes. Everything goes to fund the Just Ask!foundation! Great news for all involved!

April 14, 2009 Posted by | neurofibromatosis | 51 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

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

TERRIFIC NIGHT AT THE HOUSTON ROLLER DERBY!

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panty raider, scarlett o'hurtya, jeckill & heidi, reggie bibbs, dementia 13, david dementia 13, dirty sanchez

Tonight was the first game for the Houston Roller Derby. season.

It was a great night , and tough bouts in every match.

I have season tickets and, plan to be at every game to support all of my favorite teams as they have supported me.  All of the teams really know how to show love to there fans.  I always feel welcome at the games, and never felt more welcome anywhere else.  Don’t take my word, Just check out the photos.

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It was great seeing old friends again and making new ones.

Dementia, Mistilla, Carmen Geddit and Heidi will always hold a special place in my heart!

To all of the new friends tonight, I appreciate your kind words and I hope to talk to you again.

Maybe next time, we can talk about you!

Thank you. PHOTOS HERE!

Continue reading

March 22, 2009 Posted by | neurofibromatosis | , , , | 26 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

Am I a fireman yet?

firemanOur friend, Louise Cunningham from Scotland, sent this. I thought I would share it with you here:

In Phoenix , Arizona , a 26-year-old mother stared down at her 6 year old son, who was dying of terminal leukemia.

Although her heart was filled with sadness, she also had a strong feeling of determination. Like any parent, she wanted her son to grow up & fulfill all his dreams. Now that was no longer possible..

The leukemia would see to that. But she still wanted her son’s dream to come true. She took her son’ s hand and asked, ‘Billy, did you ever think about what you wanted to be once you grew up? Did you ever dream and wish what you would do with your life?

“Mommy, I always wanted to be a fireman when I grew up.’

Mom smiled back and said, ‘Let’s see if we can
make your wish come true.’ Continue reading

March 11, 2009 Posted by | neurofibromatosis | 17 Comments

A Meeting With Congresswoman Sheila Jackson Lee!

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I had a terrific meeting with Congresswoman Sheila Jackson Lee this morning!

Joining me at the Mickey Leeland Federal Building in downtown Houston this morning were Drs.Bart Moore and John Slopis from M.D. Andersen Cancer Center; Sandra Parker and her daughter, Emily,  Lou and myself. Sandra is a consumer reviewer for the research integration panel for the Department of Defense. She helps decide which NF research projects get funded based on consumer need and importance.

Congresswomen Jackson took time to meet with us even though she was hard-pressed for time having to fly back to Washington immediately after our meeting. I have to say she was great! She remembered me from a NF function years ago and was genuinely interested in everything we had to say. She seemed quite interested in our story (Emily’s and mine) and after getting all the information she needed,  told us that she would sign the petition to fund research for neurofibromatosis.

Congresswoman Lee also recommended other possible sources of funding that we should be aware of through the government. She will be signing on to keep funding research that will help neurofibromatosis, as well as other types of disorders that could lead to cancer. Everyone should be happy about that has happen today. All of us can benefit from this funding and from the wise support and leadership of Sheila Jackson Lee!         – Reggie

March 9, 2009 Posted by | neurofibromatosis, Research | 16 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

NF Wins Big at Houston ADDY Awards, 2/21/09

3113186027_14aa8999fd_oSaturday night was the 47th Annual Houston ADDY awards. It was the night of the stars. The American Advertising Federation honored Lou’s former boss, Don Brown, of Taylor Brown & Barnhill, while Only In Houston honored Steve Farrell, of Radio Music Theater, who is also one of the funniest guys I have ever seen. I met him after the ADDYs when Lou and I went to the theatre to present him with his award.  Steve is a great man and I was proud to meet him and his family.

But wait,  there were more winners Saturday night!3304599442_cee3e331b9_b

STANANDLOU and I won two gold ADDYs, one silver ADDY, and a Special Judges Award for Public Service Advertising for our new “Just Ask! ads! . That was a total surprise to me. I’m 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.

February 23, 2009 Posted by | ADDY Awards, neurofibromatosis | , , , , | 81 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

TRIP TO WASHINGTON DC FOR NF

3269667417_eb0347c6dc_oThe Texas Neurofibromatosis Foundation is sending a few of us to Washington DC, to speak to our Senators about Neurofibromatosis, in hopes of getting more support and funding for NF research. We leave Houston This Sunday, Feb 8th, return Wednesday, the 11th. When Susan Johnson, president of the Texas NF Foundation asked me to go with them, I was more then happy to be a part of this great opportunity to meet the Senators and show them how important it is that we have their support in the fight against this disorder. I know this trip will make a difference. Wish us luck!

SEE PHOTOS HERE!!!!

February 3, 2009 Posted by | neurofibromatosis | 82 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

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

ANOTHER GREAT STEAK NIGHT AT PJ’S & LOU’S!

3192833598_19995c7c5f_bThursday was another great Steak Night at PJ’S Sports Bar followed by a JAM session at Lou’s place.  First, after a long absence from PJ’s, we made our first visit of the year. It was great seeing John, Matt, Geo, Everett, William, PJ and a new friend,  Brieton.

After enjoying our great steaks, we went to Lou’s studio…I mean house, where we played our favorite songs, Ball and Chain, Do Lord, and I’m On Fire. We  may have the video up loaded soon. Also we have pictures of us playing. View the photos and watch for the video. Thank you Everett for some of the photos you took for us. MORE PHOTOS HERE

January 13, 2009 Posted by | neurofibromatosis | 21 Comments

My NF T-SHIRT from France!

3177673282_0f49b214a6_bMy friend Francis was nice enough to send me a t-shirt all the way from France. I’m  proudly wearing the NF FRANCE t-shirt. Francis also is a bloger here and he has is own blog page as well. He wrote about me in two of his blogs. We recently spoke on the phone and he, like all of us here, is spreading the word about nf and hope there will be a cure some day. There is always hope. The link to the site on the shirt is anrfrance.org If you would you can visit Francis blog. droitaladifference.blogspot.com/

You can use google translate if you don’t know French. It works really well. Some day I will visit France wearing my nf France t-shirt.

See all the photos HERE!

January 7, 2009 Posted by | Awareness, Friend, Just Ask!, neurofibromatosis, T-shirts | 15 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

CHRISTMAS AT JUST ASK!

3129024156_2166a4d216_bMy favorite time of the year is Christmas. Here are some fun photos taken around the office I wanted to post.

I want to wish my friends and fellow bloggers a Merry Christmas and a Joyful 3129321805_eba20415ec_bNew Year.

I will be here on the blog all week ready to blog with anyone who posts. Lets talk about what you have planned with family or friends.

Look forward to seeing you here.

December 23, 2008 Posted by | Celebrity, Friends of NF, neurofibromatosis, T-shirts | 33 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

Carolyn Farb Endowed Lecture in Neurofibromatosis

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Reggie Bibbs, Dr. Bart Moore, Carolyn Farb, Roger Packer, M.D. & Dr. John Slopis

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

Today was the Carolyn Farb Endowed Lecture Dealing with Neurofibromatosis, Roger Packer M.D. Spoke on Neurofibromatosis type1 and other topics, what could be good news for those of us that are affected by Neurofibromatosis. Lou videod if so we hope to have the video on the site soon.

You can see what Doctor Packer spoke about. I was there and I met the doctor along with Carolyn Farb, who made it possible for the NF clinics at MD Anderson. I know I felt great after hearing the lecture. Maybe you will as well. When we load the video watch and comment here. It may take time to get the video on, but I know we will have it for you. Thanks

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December 15, 2008 Posted by | Awareness, M.D. Anderson, Medical, Medical Resources, News, NF1, Research | 17 Comments

Just in time for Christmas – Just Ask! Hats!

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December 11, 2008 Posted by | neurofibromatosis | 37 Comments

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