Just Ask! to Speak at SXSW in Austin…with your help!!!

Voting for next year’s SXSW is going on now. If I get enough votes we I will have a chance to speak to a group about neurofibromatosis and the challenges. This is a great opportunity to explain to the group how I am using the internet to make people aware of Neurofibromatosis through my website. With my Blog, Flickre, Myspace, Youtube and Email. This is a group that can really help me make an even greater impact in the lives of people with NF. If you vote you will be a part in making a difference. Thank you.

Voting ends August 29 2008. Let me know if you have any questions
To vote for the panel you can go here (need to create a login)

What a Great Night at the Houston Roller Derby!!!!!!

What a tremendous time I had a the roller derby tonight. I’m really thankful for all the Houston Roller Derby has done for me. I will never forget it.

I will all ways be the number one fan. The Houston Roller Derby was our first supporter for The Just Ask Foundation.

I would say it was a success. Thank you all.

PHOTOS FROM TONIGHT!

WATCH THE VIDEO!!!

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!!!

“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!!!

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

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!

Around the World with Just Ask!

USA / South Africa	Houston, TX	Bridget and her South African Friend
Canada	Gay Paree	Italy
David Norton of Norton Pictures	Houston TX	Houston, TX
Houston TX	Burton, TX	Iraq
Los Angeles CA	Houston TX	Glennrothes Scotland
Houston TX	Houston TX

My favorite photos from tonight!

Me and Desi Cration, Shana, Carmen Geddit, Jeckyll & Heidi, Frorocious and Dementia!!!

Texas NF Pizza Party

All

photos

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

Questions I Can’t Answer, Maybe Someone Has The Answer?

Here is a post from Juliet. I hope we can get a answer for her.

Hello! Great job, keep it up! I have a step-daughter with NF type 1. She also seems to have a few risk factors for Celiac disease (I’m also a nurse). I wanted her tested, but the doctors didn’t order it. Does anyone know if there is an affiliation with NF Type 1 and Celiac? Celiac often goes in conjunction with other inherited disorders such as Diabetes Type 1, autoimmune disorders, autism, seizures in certain parts of the brain, dyslexia, and a few others… I’m trying to raise awareness with doctors and the public. Newer statistics say it may be as high as every one in 80 people. If it is a secondary diagnosis, a gluten free diet often helps control their primary illness. Reggie is an inspiration!

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!

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

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

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

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.

Houston NF Pizza Party, July 12!

MEET OTHERS WITH NF 14 STORIES FAMILY CAMP SUPPORT GROUPS NF MENTORS ASK REGGIE BIBBS	Come meet all the friends you’ve met on Reggie’s blog and website. FREE PIZZA!!! FREE DRINKS!!! FREE GAMES!!! If you or a family member has NF or you just want to help spread awareness of NF, please rsvp today! You don’t have to be an expert to hold a support group meeting. Just a desire to meet other’s with NF! Support group meetings can be as casual as getting together with other NF family members over a cup of coffee, to holding a meeting with a guest speaker. So get to know others in your area by requesting a “Support Group Starter Kit.” For more information contact Patient Outreach. HOUSTON SUPPORT GROUPS Saturday, July 12th, 2008: Houston Family Picnic view invite 11:00 a.m. - 1:00 p.m. Zuma Fun Center 6767 Southwest Freeway Houston, TX Pizza, soft drinks and tokens provided. **RSVP by July 7th by contacting Jennifer Kronvall (limited number of seats available)

Charles, June and John Lowe raise over one million dollars for Texas NF Foundation!

Texas Neurofibromatosis Foundation Newsletter

Charles, June and John Lowe raise over one million dollars for the foundation!

Charles, June and John Lowe raise over one million dollars for the foundation! The Lowes have been with the foundation since the very beginning and have been raising funds through a weekly bingo session since 1988. Their devotion and contributions are more than appreciated, they are our inspiration and the backbone of this foundation.

Senator Harkin speaks out for NF! For the past several years, Senator John Harkin has sponsored an “NF Dear Colleague letter.” This letter was drafted to ask that all US Senators support NF research through the Department of Defense Appropriations Committee. These effort are the very reason scientific advancements have been made towards a cure for NF! Please join us by personally thanking Senator Harkin for his continued support.

CURRENT EVENTS

JULY Summer Family Picnics: Bring the family and meet others in the Houston, Dallas and San Antonio areas!.

June 26, 2008: Support Group Meeting, Dallas, TX
Sept. 5-7, 2008: NF Family Camp, Burton, TX
Sept. 23, 2008: Friends FORE Friends Golf Tournament, Richardson, TX
October 18, 2008: Spam OH! Rama, Irving, TX

2008 Symposium: Dallas, TX. More details to come.

Dr. Bart Moore, “Just Ask!” and the Children’s Tumor Foundation

Hey Reggie!
I was at the Children’s Tumor Foundation (formerly National NF Foundation) meeting with Dr. Slopis in Florida. I gave a talk on brain imaging in children with NF.

Dr. Riccardi was there also and he ended his talk with these photos of you and him wearing the Just Ask T-shirt. Well, he might have upstaged me, but when I got up to speak I was actually wearing the shirt !! Dr. Slopis took a photo of me wearing it. I even turned around and pointed to the “Just Ask” like you do and everybody clapped. It was really cool and I wish you could have been there. I also ended my talk with the attached slide (Moore CTF fMRI presentation).
There were a lot of important NF researchers and doctors there.

The meeting is still going on but I had to come home and wanted to get you these photos for your website, if you want.
Vic”s slide and my slide both had your website on it so you may be getting some visitors.
Best,
Bart

Bayou City Bosses Fundraiser at Buffalo Fred’s Icehouse

Lou and I had an incredible time at the Bayou City Bosses Fundraiser last Saturday!

Everyone came up to us and said hi and posed for photos. I think Lou has a thing for Audiomind because he sure took enough photos of her!!! : >

Enjoyed talking with some of my favorite skaters including Carmen Geddit, Death by Chocolate, Sinista Sista, Mistilla the Killa, Audiomind and all the rest too numerrous to mention.

The next match is June 8th and Lou and I already have our tickets!!! If you’re interested in going, get your tickets today as they’re only going to sell 300 of them!

Charles and Aaron Neville are my new best friends!

Thanks to my friend, Matt, and the tour manager of the Neville Brothers, I received several autographed photos of myself with Charles Neville the other day. I received Aaron’s yesterday.

I had sent the four brothers autographed photos of me with each of them and had them framed. I also sent some extra for them to sign and send back.

Charles Neville signed two extra copies and took time to express mail them back. It means a lot to me that someone as famous as Charles would take the time to sign photos, write a thank you note and then send it to me from a UPS station in Massachusetts. In fact, he even called to make sure he had the right address! Now, how nice is that?!!

Charles, Aaron and the Neville Brothers are the kind of musicians and role models that I am proud to call my friends.

Thank you Charles and Aaron for being so kind and caring.

Long Live the Neville Brothers!!!

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!

IMPROVEMENTS TO REGGIEBIBBS.COM COMING SOON.

I’m excited about the new changes coming to my website. There will be a new look and more features. Everything will be done within the site including the blog!!!. There will be a live video chat. I hope to have an area on the site for Interviews with our doctors from MD Anderson with your Questions. With the hope of posting them on my site. Also I will start what I call JUST ASK ambassadors. In your area, whereever you live you can do what I am doing. A “Just Ask!” ambassador will get Just Ask business card’s, a “just Ask!” t-shirt, and their very own blog. I will post your photos when you send them. This will be global and and anyone can be a part! More to come…SOON!!!!

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

ONLY THREE DAYS LEFT TO BID ON YOUR FAVORITE DOODLE BENEFITTING NF!!!

Hi Reggie and Lou,

NF, Inc. has updated the front page of their website to promote the auction with the autographed photo of Dr. Riccardi wearing your Just Ask t-shirt! They have also included a link to your website. By the way, the auction is proceeding VERY nicely. Thanks SOOO much again for ALL your fantastic help and support!

Mari

HOUSTON ART CAR PARADE, 5/10/2008!!!

What a great day for a parade!

My second year going to the Art Car Parade, and just like last year, I had a terrific time.

Nice cars and so many to choose from that might be the best one. One that sticks in my mind, well it’s really two. The Grapes are and the Red wagon.

I also met a lot of people that was me last year and and new people that saw me on the news last week.

All the photos are here for you to enjoy. Just go to my photo page to view. Please leave a comment!

Reggie on FOX News! Watch the video here!!!

Watch the interview that has all of Reggie’s blog talking as FOX News 26 interviews Reggie Bibbs. Damali Keith revisits Reggie to see how he has adjusted to life now that he has taken his disorder, neurofibromatosis, yo the public through his “Just Ask!” campaign.

There’s even an appearrance by Lou and some of his staff!

HERE’S THE INTERVIEW!!!

I hope this link works. if not, go to

http://www.myfoxhouston.com and search for Reggie Bibbs.

Houston Astros and The ART GUYS!!! Great Weekend!!!neurofibromatosis

Yesterday was a terrific day! Starting with the Astros game. Meeting two of the players (Doug Brocail and Geoff Geary) and having my photo taken with them was great! Anyone can do it. And I think it’s a great way to show our support for all of our Houston teams. If they know how much we support them, I think we will have a successful season for all of our teams. I support you guys, in our winning games and games that don’t work out like we want.

Oh, and it is always good to see all of the nice employees at Minute Maid Park. Pretty soon I will have photos with everyone working for the park. They are always nice enough to take photos with me.

From there was a nice trip to a GREAT show with The Art Guys. My first show. Man the best way to explain their work is WOW! Boy, I haven’t laughed that like that in such a long time. I had a great time. Meeting some of the cast and the Art Guys in person was great. I talk to them on line quite often, and meeting them finally just top it off. If you haven’t seen any of the shows you should treat yourself and so see them. Check out this video, it’s hilarious!!!! It’s a homage to plywood. They also did a “Wrap Song” that was really, really, uh…interesting! Check it out here!

A special thank you to Ross Wells, of ZEN FILM, who I always get to talk to online and I have the pleasure of meeting him yesterday. Michael Galbreth and Jack Massing.

Thank you, guys for making yesterday so great. Also thank you for everything your helping me with my JUST ASK! Project! The Houston Astros and The Art Guys rule!

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.

Reggie and the Neville Brothers

How can I begin to tell you how much fun I had yesterday at the International Festival. The day stated out very well with meeting people who have seen me before. There where happy to take photos with me. I was remembered from last year. The food was terrific music was great. All types of music. I enjoyed the country music of course.

The best part of the evening was music from the Neville Brothers. Arron Neville. I actually got to meet the Neville brothers. A very big thank you to the Neville brothers for taking time to meet and take photos with me. Also thanks to my friends who joined us, Matt Jones, “The Tall One” and William Hughes, “The Smart One.” I said man I would love to meet the Neville brothers. Matt said, “I bet I could make that happen.” Well, he did and you see the photos as proof. I have to tell all of you I had the best time ever.

SEE PHOTOS OF CONCERT AND BACKSTAGE

It would be a really good thing if we could get a group together and do what I have been doing for a year. I can promise you it will change how people feel about NF, and you will feel better that you did it. Whether you have nf1 or nf2, it is a great thing to let people get to know who we are. I would really like my friend, Brian, to go with me some time. I really think people are more understanding now. It seems to me that people expect me to be there. How cool is that?!! Next stop, the “Art Car Parade!”

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