neurofibromatosis cafe

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

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!!!

Advertisements

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

wee lou makes the decision of her life

Wee Lou “Louise’ Cunningham

On Jul 24, 2008, at 8:39 AM, wee_lou_c wrote:

No unfortunately i had the scan yday and it said the tumor has
grown very large now because of this i would be cut off from the
things i call life also there wud have been a much heavier risk of
me dying straight away today. So i have chosen not to have this but
live slightly longer 2 years at the most and enjoy my family
friends and things i enjoy doing.   I thot my outcome would be so
much brighter but yet again i have to keep fighting to enjoy wat i
have left. Dont be sad.

Wee

Wee, am sad but in a way happy that at least the next two years will
have a quality of life that is better than if  you had the
operation. I wish I was as brave as you, Louise, to calmly say I have
two years left at the most. I wonder if there is a way to get your
records shipped to M.D. Andersen Cancer Center so our NF doctors here
could take a look at them. Are you flying back now or driving?

Lou

July 28, 2008 Posted by | Friends, neurofibromatosis, nf | , , , , | 13 Comments

Tuesday Night at Beavers! 7/22/08

William Hughes, Michelle Reed and Lou Congelio meet new friends at Beavers, Sawyer at Washington in the Heights. SEE ALL THE PHOTOS!

July 23, 2008 Posted by | neurofibromatosis | 6 Comments

Around the World with Just Ask!

Bridget and some bird from South Africa

USA / South Africa

The girl that was sitting next to Michelle and is dating a Buc-ee's fan

Houston, TX

Bridget and her South African Friend

Bridget and her South African Friend

Canada

Canada

Gay Paree

Gay Paree

Italy

Italy

David Norton of Norton Pictures

David Norton of Norton Pictures

PJ's Houston TX

Houston TX

Houston, TX

Houston, TX

Houston TX

Houston TX

Burton, TX

Burton, TX

Iraq

Iraq

Los Angeles CA

Los Angeles CA

Houston TX

Houston TX

Glennrothes Scotland

Glennrothes Scotland

Houston TX

Houston TX

Houston TX

Houston TX

July 21, 2008 Posted by | neurofibromatosis | 6 Comments

Texas NF Pizza Party


All

photos

July 12, 2008 Posted by | neurofibromatosis | 5 Comments

Please send positive energy to wee lou!

I was talking with wee lou (Louise Cunningham from Scotland) the other day when she hit me with a bombshell…the operation she is having on Friday, July 25 is a little more involved than she first let on.

In fact, it’s downright dangerous.

She will be getting a tumor removed from her brain stem which will result in some pretty horrific side effects. I’ll let her telll you in her own words. (She gave me permission to share the email she sent me.)

“I haven’t explained everything about this op. The outcome will change me. Yes i will exist but i wont be louise like everyone knows and have grown to like i will be completely dependant i wont be able to walk, talk, eat or do all the things ppl take for granted. Today my mum asked do i still want to go through with this as supposedly i have to think about my self not what every1 wants.

i will be fed by a tube coming out from my stomach, ive had it before its vile but i had it through my nose as this was temporary then. ive known about 3 to 4 months im not sure of my emotions of it.

Yes iv had a few opinions yes but unfortunately they all said the same. I wont be paralysed but such a sitting in a chair i will easily fall as the first op i had when i was 16 took away my balance

which i have learnt to control but this time my balance will go completely. If i dnt go for it loads i will have a couple of years left and unstoppable headache’s. I usually just go with wats my friends and family but a few have realised it will take its toll on me.”

Wee Lou is going through an incredibly tough time right now and she needs our love and support more than ever before. If you could take a moment to post a message to her on this blog or on the live chat or via an email, I know it will be very much appreciated.

Her email is wee_lou_c@hotmail.co.uk

July 11, 2008 Posted by | neurofibromatosis | 15 Comments

Houston Rocket Power Dancers at PJ’s last Thursday night.

We met two real nice people tonight, Kelly and Kristi Kincaid (Kristi Pictured). They both asked if they could buy a shirt. I said, “Sure!” Also ran into the Houston Rockets Power Dancers. A fun night for all!

July 4, 2008 Posted by | neurofibromatosis | , , , , | 10 Comments

The Kiss! Brian and Mistilla “the Killa” of the Houston Roller Derby

Brian and Mistilla the Killa finally meet. (MORE PHOTOS)

June 29, 2008 Posted by | neurofibromatosis | 16 Comments

The Gang at Steak Night at PJ’s

(l to r)

William Hughes, John AuCoin, Lou Congelio, “Geo”, Can’t remember her name, John Person, Gus, Mistilla the Killa, Reggie Bibbs, Jekyll & Heidi, and Kraig Junck

June 27, 2008 Posted by | neurofibromatosis | , , , , , | 6 Comments

Meet “JUST ASK” Live Chat-Person, wee_lou_c from Scotland

hey fellow nf’ers its louise here aka wee_lou_c i’m 20 i’m an aquarius as my date of birth is 4th february 1988, i come from the U.K a quaint little town in the bonnie land of scotland it is called glenrothes which i’m guessing is called a state to you guys but its a county here but that is in fife so i’m a fifer. at the age of six i had a biopsy which verified i had nf but i never found this out till i had vision problems at the age of 12 so i was then officially diagnosed with nf2. iv had a little trouble within the years but nothing i couldn’t fight my way through as i believe to get on you have to forget what you have lost and remember who and what you still have. i like to chat as its great speaking about all the different cultures and food and things happening around the world plus i’ve made many new cool friends. i am a complimentary therapist so i like the calm side of life but i’ll never say no to a party. i absolutely love watching lovey dovey films aka chick flicks, i also love scottish stovies they are really braw oh i am sorry i mean good.
take care all and have some fun.

June 26, 2008 Posted by | Friend, Friends, neurofibromatosis | 22 Comments

Reggie Wins Big at AMA Crystal Awards!!!

Reggie won the American Marketing Association’s highest award, the Crystal Award, for his blog dedicated to awareness of neurofibromatosis and support for those affected.

Reggie won the award in the Online Social Network or Blog
category

We met a great couple, Melissa and some guy whose name I can’t remember, sorry about that. They are from L to R: Melissa’s husband, Melissa, Reggie and Bill Courtney at the AMA Crystal Awards.

Thanks Melissa, the most beautiful woman at the AMA Awards tonight for taking your photo with us. And, ok, thank your husband too! : > ) Clink on this link to see all of the photos!

May 22, 2008 Posted by | neurofibromatosis | 64 Comments

Steak Night at PJ’s, 5/15/08!

We had a blast last night at PJ’s!!!! Here’s what’s going on the rest of the week.

Karaoke Every other Friday 9:00PM Football Sundays Bring your favorite dish, line up a cab or designated driver, and join the fun Poker Every Tuesday 7:00PM to 10:00PM Thursday is Steak Night Good Food, Good Friends and Good Sports. 614 W Gray St. (2 blocks east of Montrose) 713. 520.1748

May 16, 2008 Posted by | neurofibromatosis | 106 Comments

Reggie’s Ad in This Week’s TIME Magazine

This ad is the one that ran!                                   We decided to run this ad later.

Reggie felt that maybe people might be shocked by his actual photo in the ad so he requested that we change the ad to the visual on his shirt. What do you think? If you were a reader of TIME magazine and turned the page to see a visual of a man with a disfigurement, would you be repulsed or filled with compassion? Be honest.

April 29, 2008 Posted by | neurofibromatosis | 148 Comments

Reggie, I need your help!

Reggie,
I have watched with admiration what you are doing for NF, with your website promoting awareness. Our 8-year-old daughter Victoria has one of the more severe cases of NF1, although you wouldn’t know it by looking at her.

She was diagnosed with NF1 at 9 months when our APRN noticed the Café-au-Lait spots. By 2 years of age, Victoria was complaining of headaches and was soon diagnosed with a tumor between her optic nerve and hypothalamus.
Victoria currently has learning disabilities, vision problems, and attention problems and with the development of a second growing tumor in her basal ganglia she is now experiencing almost daily debilitating headaches and psychological and social problems. We pray every day that the tumors will become stable and that she will not suffer any more symptoms.

Despite all of this Victoria is a vivacious, fun and independent little girl who amazes everyone that knows her.
We have watched hopefully in the last year as new discoveries have been made about this terrible disease and even as a cure becomes a possibility…. but it looks like the funding is drying up!!

I recently received this petition to sign to continue funding for research, and sent to all my friends and family, I am proud to say most of the signatures there are our friends and family. But it’s not the 1000 signatures that the initiator is looking to bring attention to this. With your connections and website I wondered if you would be able to get more exposure and get the petition signed.

Hope to hear from you …. and once again … Thank you for all you do to bring understanding, you are an inspiring and amazing man!!

~Ruth~

rnrnuss@aol.com
“The measure of a life, after all, is not it’s duration, but it’s donation”
Corrie Ten Boom

April 24, 2008 Posted by | neurofibromatosis | 55 Comments

Houston Highlights – WHAT A BLAST!!!

Reggie had to go get his MRI so I thought I’d post some photos from last night until Reggie had an opportunity to write the blog about Houston Highlight. I will say that special, special thanks go to corporate sponsor, Continental Airlines, Tom Koch, anchor at ABC 13, the Houston Roller Derby, Del Frisco’s Double Eagle Steak House, Sullivan’s Steakhouse, Joyce’s Ocean Grill, Chef John Salazar, and the Spritz Bar & Grill House. Great food! Great entertainment! Great cause! Great night!!!

April 23, 2008 Posted by | neurofibromatosis | , , , , , , , , , , , , , , | 41 Comments

URGENT!!! NF NEEDS YOUR HELP!!!! Deadline: Wed, April 9!

Just received this from my friend, Dr. Moore, at MD Anderson. I’m writing my letter now! I hope you can too! Here are 2 links that will make it real easy for everyone to send a letter!

Or, scroll down to the bottom of this blog and you’ll find ready-made letters to key subcommittee members . All you have to do is replace Lou’s Name and Address with your own then FAX it to the number on the letter. It’s that easy! Continue reading

April 7, 2008 Posted by | neurofibromatosis, nf | , , , , , | 67 Comments

Congratulations, Emily!!!!

Hey everyone! Hope you all are doing well! I have a free minute while the baby naps so I just wanted to drop in and say hello. Also, we got a phone call a couple of days ago from the Ghost Hunters production team, they are considering using us in one of their episodes. We are still having problems with whatever is in our house so I will gladly be on tv if it means I get some help, lol.

I have some news about Elijah but I am going to update his website with that so make sure you read it!

I’ll get back when I can, I just cannot believe how busy its been around here! My husband is having surgery again next week also so I will be extra busy 😦

“Morty” is great, he really is growing like a weed! The outfit we brought him home from the hospital in

doesnt fit him anymore and its only been 5 weeks. Here are a couple of new pictures: (SEE ABOVE OR CLICK ON LINKS)

http://i28.tinypic.com/2e213dx.jpg
http://i32.tinypic.com/6pqjhj.jpg

Unfortunately Elijah started one of his vomiting episodes this morning so he is at the ER right now getting fluids, but Bill just called and said he is already feeling much better so hopefully he wont be admitted and he will come home in a little while.

– Emily

April 4, 2008 Posted by | neurofibromatosis | | 77 Comments

NEUROFIBROMATOSIS AD TO RUN IN TIME, NEWSWEEK and U.S. NEWS AND WORLD REPORT!

2357623769_f10072ed37_b.jpgMay is National Neurofibromatosis Awareness Month!newsmaglogos.gif2334669090_750680bb56_b2.jpg

Thanks to Laurie Selzer and my friends at MNI (Media Networks Inc – a division of TIME, Inc.), we will have a full page ad in the May Houston home edition of Time, Newsweek and US News & World Report magazines to help promote National Neurofibromatosis Month!

STANANDLOU Advertising was nice enough to prepare the attached ad that you see here inviting people to “JUST ASK!” about neurofibromatosis.

CLICK HERE TO DOWNLOAD A HI-RESOLUTION COPY OF AD

March 24, 2008 Posted by | neurofibromatosis | 137 Comments

Baylor College of Medicine monthly genetic series to focus on neurofibromatosis at Health Museum of Houston

logo.gifHOUSTON — (March 4, 2008) — A discussion on neurofibromatosis, a genetic disorder that causes tumors to grow on nerve tissue, producing skin and bone abnormalities, will be presented in a public forum March 25 at The Health Museum of Houston.Neurofibromatosis is one of the most common genetic disorders, occurring in approximately one in 3,000 births.

The forum will feature genetic expert Dr. Maria Blazo, assistant professor of family and community medicine and molecular and human genetics at Baylor College of Medicine in Houston. The parents of a child with neurofibromatosis are also scheduled to speak.

Organized by BCM and Texas Children’s Hospital, the event is part of a monthly “Evening with Genetics” lecture series organized by BCM’s Department of Molecular and Human Genetics. The series offers current information regarding care, education and research about genetic disorders.

The program is free and open to the public. It will be held at 7 p.m. at The Health Museum of Houston, 1515 Hermann Drive. For more information or to register, contact Susan Fernbach at 832-822-4182 or fernbach@bcm.edu

March 11, 2008 Posted by | Awareness, Medical, Medical Resources, neurofibromatosis, Research | 49 Comments

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

May is National Neurofibromatosis Awareness Month

10905hnnmayfinal.pdf

March 1, 2008 Posted by | Awareness, CTF.ORG, Friends with NF, http://www.ctf.org, Laurie Selzer-MNI, neurofibromatosis | 1 Comment

New Facebook Group – “Friends of Neurofibromatosis”

picture-1.pngTo All:

I have created a group on Facebook called “Friends of Neurofibromatosis.”

To those of you unfamiliar with Facebook, it is a FREE website that allows you to do a lot of things like post photos, videos, and friend links, much like MySpace, but with one very important difference. It allows members to form groups of like-minded people who share special interests and allow them to easily interact with each other.

I can’t think of a more perfect tool to use in building a community of people who are challenged by neurofibromatosis in one way or another than this. Whether you have NF, have a friend or family member with NF, or are just interested in helping people with NF, this is the website for you.

By becoming a member of this group, you will be able to connect with other people who share the same frustrations, burdens and pain of NF. You can pass along information that you think might be helpful to others. We can send time-sensitive newsletters to ALL group members with a click of a button when an important event or news item occurs.

Facebook will never replace this blog but it will provide us the means to meet new people, build awareness, share information, and, most importantly, help us build a community that helps provide comfort, education, distractions and support to all affected by NF.

Please check out the group at this link and if you can see the endless possibilities that this site provides, please join!

I thank you! —Lou http://www.facebook.com/group.php?gid=21960217912

February 7, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Community, Facebook, Friends of NF, Help, neurofibromatosis, nf, Texas NF Foundation | , , , , , | 153 Comments

Emily’s Name-My-Baby Contest!

y1p3lb28exaadeupbygs6ljvchkt687fu08plfbpuxe1g9ggcoz98ivujlltbg8-w38nmhdxtpmsto.jpegI have a baby due in March. This is a contest to help my husband and I select a name, and also to have some fun. We don’t guarantee we will use a winning name selected for the contest, but it’s a real possibility. Submit your entry via this blog per the instructions below. Enter as often as you like, as many complete submissions per blog entry as you wish.
– Emily
Continue reading

January 29, 2008 Posted by | Awareness, Emily's Name-My-Baby Contest!, Friend, Friends with NF, neurofibromatosis, T-shirt | 155 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

Reggie Bibbs Wikinews Interview

17115693_160x120.jpgReggie Bibbs was interviewed on Nov 23, 2007 for Wikinews describing what it is like living with neurofibromatosis and what he has done via his website, blog and other resources to increase awareness of NF.”

Click to watch Reggie Bibbs interview on Neurofibromatosis

November 29, 2007 Posted by | About Me, Awareness, Blogs, Celebrity, Friends with NF, M.D. Anderson, neurofibromatosis, Research, Texas NF Foundation, Video | , , , , | 24 Comments

Watch ABC/Channel 13 tonight for my interview with Christi Myers!!!!

1832058392_4cc394534e.jpgThat’s right! Tonight on channel 13 my interview with Christi Myers will air. It should be around 6:30pm and 6:45. The interview want very well. We filmed in my bed room, as I was working on my website. I’m looking forward to your comments on the story.


CLICK HERE TO SEE MORE PHOTOS!

CLICK HERE FOR TV INTERVIEW

November 2, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Awareness, Just Ask!, neurofibromatosis, News, nf, NF in the News, PR | , , , , , , | 149 Comments

Reggie Bibbs – Denise Terrill Golf Classic Benefitting NF

1738847890_3032411139.jpg

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

reggiebibbs.com Wins 2007 WebAward

reggie_webaward-medres.jpgTHE WEB MARKETING ASSOCIATION IS PROUD TO PRESENT THIS

2007 WEBAWARD

FOR OUTSTANDING ACHIEVEMENT IN WEBSITE DEVELOPMENT TO:

REGGIE BIBBS

The Web Marketing Association was founded in 1997 to help set a high standard for Internet marketing and development of the best websites on the World Wide Web. Staffed by volunteers, this organization is made up of Internet marketing, online advertising, PR, and top web site design professionals who share an interest in improving the quality of online advertising, internet marketing, and website promotion. Continue reading

October 10, 2007 Posted by | neurofibromatosis | , , , , , , , , , , | 184 Comments

Reggie’s Blog Passes 28,000 visits! Correction: 30,000 Visits! 32,000!!!

1177763205_27435df9801.jpgbrianreggie.jpg873903763_592f7efd93_s.jpg376702630_0e7ac2eb0e_o.jpgreggiebibbswhoami2.jpgmy-posse_2.jpgfiesta.jpgwelcome-to-minute-maid.jpg376701803_3142b86ab3_s1.jpgReggie and Mom in “Just Ask!” t-shirt.reggiestill.jpgbigredheart1.jpgloureg2.jpgamanda1.jpg376702462_884115d624_s.jpg481662125_fb805462622.jpg

Over 170,000 people have visited his website that went live in December, 2006.

Over 28,000 people have visited his blog since he started it in February, 2007, with over 150 posts and over 1,700 comments.

Reggie has posted close to 2,000 photos of him and his new friends on his Flickr page with over 29,000 views!

YouTube has recorded over 10,000 views of his videos and PSAs.

Not a bad way to increase awareness of neurofibromatosis, Reggie!

October 2, 2007 Posted by | Awareness, Blogs, neurofibromatosis | , , , , , , , , , , , , , , | 69 Comments