neurofibromatosis cafe

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

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

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

A NOTE FROM KEVIN NEALON.

3090342427_26cb9dd5b3_b3090342561_eb020396fa_bThis weekend I got the shock and surprise of my life! I was going through my emails looking for a phone number when I came across an unopened email dated November 14! It was from my new friend Kevin Nealon, from Saturday Night Live, who I had just met the night before.

I have no idea how I missed this very important email but I guess it was because I was traveling and wasn’t able to check email till I got back home. Anyway, here is the very nice email that Kevin wrote plus the photos he sent.

Hey Reggie,
So great meeting you last night, and your friends! I’m so
flattered that you guys came to my show. Oh, loved your website, too!!
Susan and I loved checking out each category. Great videos and pics,
great coverage on the news stations as well. We’re so impressed with
your courage and your raising awareness of NF. What a difference you
are making! Please keep us updated on the foundation.

Attached are a few pictures of me wearing your shirt. Btw, it
fits me like a glove. I have a new cause now. 🙂

Best wishes,
Kevin and Susan

Most of you have seen the photos from my trip to Manhattan Beach California, when I went to visit my friend, Scott. Well, on the visit, Scott suggested we go see Kevin Nealon at the Comedy club. That is where it all happened. After the show Kevin came over to meet me. It was there when I shared with Kevin and his Wife Susan about NF. What a nice couple they both are. So kind and understanding to NF, and the JUST ASK campaign. I’m proud that Kevin is wearing one of my JUST ASK! T-shirts. You never know where you may see one next. Thank you Kevin and Susan for your support. Hope to see you soon.

December 8, 2008 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Awareness, Benefit, Celebrity, Favorite Places, Friend, Friends, Friends of NF, Fun, Fundraising, Help, Just Ask!, News, nf, NF1, Photos, T-shirt, Texas NF Foundation | 33 Comments

Tumornators Search for Cure with Rock 4 Research Concertatosis

jeffThe Tumornators and Jeff Francoeur of the Atlanta Braves present the 2nd Annual Rock4Research benefit concert on Nov. 28 at Wild Bill’s. The concert features Matt Moore opening for headliner Rhett Akins.81ba489f-2ae5-4d2f-ba93-c855cbc2b7d4

Akins is known for country hits including “What They’re Talking About,” “That Ain’t My Truck” and the No. 1 hit “Don’t Get Me Started.”

Francoeur, Matt Stinchcomb of the NFL, Morten Anderson and other sports stars will spend time with guests at a VIP party beforehand. VIPs will also be able to enjoy catered food sponsored by Kroger, Chick-Fil-A and Chili’s. VIPs will also have the opportunity to bid in a silent auction featuring signed sports memorabilia and other exclusive items; VIPs are guaranteed to receive signed picture of Francoeur.r4rpics

All funds raised by The Tumornators are directly donated to The Children’s Tumor Foundation.  The foundation is dedicated to raising money and awareness for the painful illnesses Neurofibromatosis and Schwannomatosis.

mattFrancoeur has supported The Tumornators since their beginnings in 2007, and has donated $500 to the Children’s Tumor Foundation™ on behalf of The Tumornators for every home run he hit in his 2007 season with the Atlanta Braves.
Rock4Research tickets will be available at the door and online, costing $20 for the VIP party and $10 general admission. The VIP party begins at 8:00 p.m., and doors open for general admission at 7:00 p.m.

The first 50 guests will receive a Rock4Research T-shirt signed by Francoeur.

For more information, please visit www.rock4research.com or www.tumornators.com .

Contact: Chad Leathers chad@tumornators.com     706.366.7321

Contact: Brittany Raines rainesbr@uga.edu     678-522-6534

November 19, 2008 Posted by | Awareness, ctf, Fundraising, neurofibromatosis | , , , , , , , , | 29 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

Dr. Bart Moore say’s “JUST ASK!” with his new mug and state-of-the-art, homeopathic “JUST ASK!” forehead patch

bartaski.jpgGuess who visited my on line store recently?

Yep, my good friend and also doctor, Dr. Bart Moore of MD ANDERSON CANCER CENTER. He is proudly displaying the items that he purchased at the “Just Ask!” online store a short time ago. Not only is he a supporter of NF and “Race Across America for NF”, he’s also a very cool guy to have on your side.

Could you get your doctor to take a photo like this? I don’t think so! What a great sense of humor. Thanks for sharing your photo Dr. Moore! You’re the best!!!

Check out what people had to say about Bart at my Flickr account.

January 22, 2008 Posted by | Awareness, CTF.ORG, Friend, Friends of NF, Fundraising, Just Ask!, M.D. Anderson, Medical Resources, neurofibromatosis, Texas NF Foundation | , , , , , | 281 Comments

Ok, Reggie, whose butt did you have to kiss for this?!!

www_sticker_tk_kiss_my_ass-1.jpg

Reggie,

Per our conversation on the phone, I would like to welcome you to the Honorary
Board of the Texas Neurofibromatosis Foundation. It is a privilege to have you on the board.
The foundation appreciates all you have done for Texas NF and NF awareness.

We look forward to working more with you in the Houston area.
Talk to you soon.

Cindy Hahn, M.Ed., Managing Director, Texas Neurofibromatosis Foundation Continue reading

January 17, 2008 Posted by | About Me, Awareness, Fundraising, neurofibromatosis, nf, NF in the News, Organizations, Research, Texas NF Foundation | , , , , , | 218 Comments

HAPPY NEW YEAR 2008

01a-wrap-cover_splash.jpgHappy New Year 2008!!!

Well, a year has passed and we are at a new beginning. I look forward to great things this year. Maybe something new for NF research. Let’s keep hope alive. Now lets talk resolutions. Or promises, or whatever you want to call it. Something I want to do this year is build up my friends list to at least 200 or 300 friends with NF on myspace.com dailystrength.com or youtube.com Any one of the three. Oh yea, one more thing. drink more Starbucks and hopefully meet with some of my friends that I talk with everyday about coffee.

On a serous note. Please remember our real HEROS in 2008 in the U.S. ARMY, and military service members. When you see someone in uniform say thank you.

January 2, 2008 Posted by | About Me, Awareness, Friends, Friends of NF, Fun, Fundraising, Just Ask!, neurofibromatosis, Research | , , , , , , , | 150 Comments

Reggie Bibbs JUST ASK! ONLINE STORE NOW OPEN

cup8x10.jpgI’m proud to present to you the Reggie Bibbs online Just Ask! Store. We are now open. There are a wide range of new products available.

jitcrunch.jpeg

We can increase awareness of Neurofibromatosis on a wider range, at the same time raise money for neurofibromatosis.

All proceeds will go toward research and awareness. I know you will find a product that will meet your fashion needs. My original shirts can be ordered from my site. The new link will take you to the store.

Happy Holidays and Happy Shopping!

December 22, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Adgiant, Appearances, Awareness, Friend, Friends of NF, Fun, Fundraising, Just Ask!, neurofibromatosis, News, NF1, NF2, Reggie's Search Machine, T-shirt, Texas NF Foundation | , , , , | 141 Comments

Reggie Bibbs – Denise Terrill Golf Classic Benefitting NF

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Reggie was asked to say a few words and, from what I heard, did a tremendous job!

The Denise Terrill Charity Classics is an organization of volunteers whose purpose is to organize and operate the Denise Terrill Charity Tennis Classic and the Denise Terrill Charity Golf Classic. The goal of these charity tournaments is to raise money for research to find a treatment and cure for neurofibromatosis-2.

CLICK HERE TO WATCH NEWS STORY ON DENISE TERRILL

CLICK HERE FOR PHOTOS

October 25, 2007 Posted by | Awareness, Denise Terrill Golf Classic, Fundraising, neurofibromatosis, Research, Texas NF Foundation | , , , , , | 15 Comments

“Uncle John” Turner Dies

FOR IMMEDIATE RELEASE
Contact: Mark Murray
ph: (512) 587-6833
email: mmurray@kvue.com

“Uncle John” Turner
August 20, 1944 – July 26, 2007

Legendary Texas Blues Drummer Dies at 62

B.B King once exclaimed, “Man, I can set my watch to your time!”


Legendary Texas blues drummer “Uncle John” Turner died Thursday, July 26th, in Austin, Texas from complications related to hepatitis C. He was 62 years old.

Born in Port Arthur, Texas, Uncle John was a childhood friend and bandmate of legendary southeast Texas blues and rock guitarist, Johnny Winter. While playing drums with Winter in 1968, Turner convinced him to try a full-blown blues band format and sent for his friend Tommy Shannon to play bass. Success quickly followed, and the trio went on to record what many consider to be three of Johnny Winter’s finest albums: “The Progressive Blues Experiment,” “Johnny Winter,” and “Second Winter.” With fourth member Edgar Winter, they played Woodstock in 1969, as well as numerous other festivals and shows around the world. Continue reading

July 26, 2007 Posted by | Friend, Fundraising, Music, neurofibromatosis, News | 1 Comment

Uncle John Turner Benefit at Dan Electro’s Guitar Bar

Jerry LaCroixLou and I went to the Uncle John Turner Benefit at Dan Electro’s Guitar Bar today and had a blast! Uncle John Turner is a pretty famous drummer who is in dire need of a liver transplant. Uncle John has played and jammed with some really cool dudes like Johhny Winter, B. B. King, Jimi Hendrix, Freddie King, Muddy Waters, Junior Wells, Lightnin’ Hopkins, Johnny Copeland, Albert Collins, James Montgomery, Paul Nelson. and many more.

Yesterday afternoon was my first Blues concert! I got to hear some terrific music with Lou. I thought, this would be the perfect chance to reach more people, and tell them about NEUROFIBROMATOSIS. I said sure. Oh wow! I’m happy I went. I met so many nice people who treated me just as I want to be treated. No one stared, No one laughed, Only one seemed uncomfortable setting next to me. I met a lot of people, who I would never have met if I had not gone to the concert. The music was great. What a great benefit! I was proud to be there to help support the cause.

Some of the performers who donated their time and talent include Sonny Boy Terry with Little Ray Ybarra, Paul Orta, Texas Johnny Brown, Hightailers w/Little Screaming Kenny, Jerry LaCroix, Ezra Charles, Michael Milligan & the Altar Boyz, Rehabiliteens w/TC Cannon, Allison Fisher Orch w/Teri Greene, Erin Jaimes, Eric Tessmer and Gary Clark Jr. EMCEE was KPFT 90.1 FM’s Blueshound

Click here to see photos from the benefit and help me identify some of the performers! More info: www.uncathon.com

874561488_6683a448f5_s.jpg873865895_8623e3077e_m.jpg873903763_592f7efd93_s.jpg874557896_144ffaaaf7_m.jpg874548076_047420c3a1_m.jpg874544278_28331ecf4a_s.jpg874755838_97ccdc6ae1.jpg

Continue reading

July 23, 2007 Posted by | Benefit, Friends, Fundraising, neurofibromatosis | 4 Comments

FORTH WORTH MAYOR MIKE MONCRIEF

376702630_0e7ac2eb0e_o.jpgI received a wonderful letter from my friend from years back. At the time I met Mike Moncrief, he was Senator Mike Moncrief for the State of Texas. And now he is Mayor Mike Moncrief of Fort Worth. He and his wife Rosie have been very supportive in everything I have been involved in. You will see that in the photos in my picture section on Flickr. Mike and Rosie also wear one of my JUST ASK t-shirts. I’m honored to call them my friends!

Here is the email that he sent me today:

Mike & Rosie Moncrief, Mayor and Mrs. Mayor of Fort Worth

“Hey Reggie, I just visited your website and i was most impressed. The ongoing
challenge of raising awareness of NF and search for a cure is made easier by your efforts. By the way, I wear my Tshirt every chance I get and have had numerous folk come up to me and ask about it. Keep up the great work and you are more than welcome to post this email on your blog.

Your Bud,
Mayor Mike

July 1, 2007 Posted by | Appearances, Awareness, Friend, Friends, Fun, Fundraising, Help, Just Ask!, neurofibromatosis, News, nf, NF1, Photos, T-shirt | 4 Comments

MY NEW FRIENDS IN THE UK.

i183123312_96166_4.jpgI’m so happy that I am meeting new friends, to share our stories with one another. I asked Katie’s mom Vanessa about the UK. She writes a lot of things I enjoyed reading. I wanted to share them with you. Read below. I’m looking forward to the video, which I hope to post here. Thank you Katie and Vanessa! Continue reading

June 29, 2007 Posted by | About Me, Astros Game, Awareness, Friend, Friends, Fun, Fundraising, Help, Medical, neurofibromatosis, News, nf, NF Bulletin Board, NF1, Video | 1 Comment

“JUST ASK!” IS OFFICIAL

656515238_bdfd0d2b77.jpgToday I went to the Harris County Court House and filed JUST ASK! as a DBA in the STATE OF TEXAS. I am so happy! This is terrific news because it makes me feel that what I’m doing is very real: To the State of Texas and to the people who are affected by neurofibromatosis.

Not only did I file a DBA but I also opened a business checking account at Compass Bank under the name “Just Ask!” The checks will have my logo on them (drawing of my face) and “Just Ask!” Continue reading

June 28, 2007 Posted by | About Me, Appearances, Awareness, Fundraising, neurofibromatosis, nf, NF1 | 10 Comments

Texas NF Foundation presents $90,000 check to MD Anderson

thecheck6.jpgToday I was invited to join members from the Texas NF Foundation and doctors from MD ANDERSON HOSPITAL for a special presentation.

Minerva Terrill, a board member of the Texas NF Foundation, presented a check for $90,000 to the hospital for NF research. This is something all of us who are affected with NF can be very excited about.

Great researchers and clinicians are out there looking for a cure and there are great people like Minerva and Cindy Hahn who are doing what they can to raise the funds needed to fund that research. We have a lot to look forward to. Stay tuned! I know more good news is ahead.

June 21, 2007 Posted by | Awareness, CTF.ORG, Friend, Friends, Fundraising, http://www.ctf.org, Medical, neurofibromatosis, News, nf, NF Bulletin Board, NF1, Photos, Research, Texas NF Foundation | 5 Comments

ADDY AWARDS

awards2.jpgI thought it would be nice to show some of the addy awards we won in neurofibromatosis. The awards are for the PSA and the work that is going on with the website. It is because off all the support you are giving. keep visiting my site and the blog. I thank you for your support

This show that we are starting to get notice. This is what we want. Its only the beginning. It a start of something big. I’m sure there will be more to come. You can rest a sure I will post the others when we receive more.

June 6, 2007 Posted by | About Me, ADDY Awards, Awareness, Fun, Fundraising, neurofibromatosis, nf, NF1 | 3 Comments

Barack Obama Doodle Earns $2,000 for NF Research!!!

A doodle by Senator Barack Obama sold for over $2000 on eBay today. The drawing, featuring fellow senators Harry Reid, Dianne Feinstein, and Edward Kennedy, was sold as part of the National Doodle Day initiative. National Doodle Day sells celebrity sketches to raise funds for Neurofibromatosis, Inc.

May 30, 2007 Posted by | Awareness, Fundraising, neurofibromatosis, Research | , , , , , , , , | 5 Comments

Laundry Day Book Proceeds benefit CTF – The Children’s Tumor Foundation!

Jacquie Rogers

People have been washing clothes (or furs) for a long time. Most sites say that humans finally got a clue that good hygiene made for better health. I’m of the opinion that people liked to be comfortable then as now. Their skin chafed and got rashes just like ours does, so it stands to reason that they’d want to rid themselves of particulate matter just as we do. Take a look P&G’s overview of laundry methods from prehistoric times until the present for good information on products used, and when.But, lazy person that I am, I’m more interested in gadgets, so let’s start a little later in the game…say, the 1800s. Continue reading

May 27, 2007 Posted by | CTF.ORG, Fundraising, neurofibromatosis | , , , , , | Leave a comment

Watch the history of the Texas NF Foundation Video!!!

Texas NF Foundation 15th Anniversary VideoI have a terrific video for all of you!

About 10 years ago, I was asked to help participate in a video detailing the history of the Texas Neurofibromatosis Foundation. Our 15th Anniversary was coming up and Bob Hopkins, the Executive Director at the time, wanted to recognize the people who brought us to where we were while also helping educate the new trustees, volunteers and patients about the history of the foundation and all of the ground-breaking work we helped initiate.

I’ve just watched it for like the 100th time and I’m still learning more stuff!

Click here for the link to the Texas NF 15th Anniversary Video!

Continue reading

May 18, 2007 Posted by | Awareness, Friends, Fun, Fundraising, neurofibromatosis, Texas NF Foundation, Video | 4 Comments

We endorse the The Fight For Federal Funding For NF Research Petition to U.S. Congress. SIGN PETITION BELOW

To: U.S. Congress

Neuro-fibroma-tosis. Have you ever even heard of it? Probably not, even though it is the most common neurological disorder affecting 1 in 3000 people. Neurofibromatosis (NF) is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time.

NF affects all races, all ethnic groups and both sexes equally. And as of yet, there is no known cure for NF.Clinical drug trials are being conducted by ten major hospitals called the “NF Clinical Trials Consortium”. With these trials comes the hope of accelerating drug development.

SIGN PETITION Continue reading

May 11, 2007 Posted by | A MESSAGE FROM REGGIE, CTF.ORG, Fundraising, neurofibromatosis, NF1, Texas NF Foundation | 6 Comments