Thank 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. Read more »
My 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!
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
Youngstown Ohio Read more »
We 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.
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
To the many new friends that I met at the Texas Renaissance Festival on Friday I’d just like to say, thank you for making it one of the most fun days in my life.
There are so many new people that I’ve met that I don’t remember your names but you can definitely see your photo below. Special thanks to Taarna the Ice Queen Faerie for the beautiful handmade pin that I’ll treasure forever, Queen Bonnie and her Realm for making me a Knight (Don’t worry, I will smash the wicked peeps at every opportunity!).
Thank you Arsene Dupin – Juggler, Magician, Comedian, Mime Extraordinaire, Louis and Matt – The Fabulous Other Brothers, Blair the Beer Mistress, The Kissing Lady that was so sweet, the guy from the Houston Roller Derby with the beard and kilt, my special friends from Goodwill, the English couple in black leather that I had my picture taken with last year and this year, and finally to all the hundreds and hundreds of people at the Texas Renaissance Festival who make me feel like a King.
Thank you all and I’ll see you next year! MORE PHOTOS HERE!
The 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.
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.
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.
Francoeur 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.
Contact: Chad Leathers email@example.com 706.366.7321
Contact: Brittany Raines firstname.lastname@example.org 678-522-6534
It’s good to be home, but sad to leave the company of my great new friends. Thank you all for your kindness.
Reggie is currently on vacation in Los Angeles visiting with his new friend, Scott Dickson and his family. While in LA, Reggie had the opportunity of visiting with old friend, Greg Gorman. Greg is an internationally known photographer known for his stark, vivid images of the famous and not-so-famous.
Greg has been an important part of Reggie’s life since being introduced to Reggie by Houston socialite, Carolyn Farb.
Reggie has been featured in Greg’s books and showings.
Reggie with Susan and Kevin Nealon and Scott Dickson in LA.
See more photos at Reggie’s Flickr account here!
Reggie, Lou, William and Geo went to one of my favorite places in the world, the Texas Renaissance Festival.
I met a lot of great people like Lisa, Christina, Lewis, Barbara “The Fairy Lady” and saw a lot of old friends including the “Pretzel Guy” and the belly dancers from the International Festival.
The weather was perfect, the entertainment very good, and I had the BEST DARN steak on a stick I’ve ever had!
Now if there was some way we could go without Lou having to tag along!!!
We are thinking of redesigning the shirts so they are simpler, more fun, and are equally appealing to men and women.
We have two styles we’re looking at – distressed and/or solid colors. We’re also investigating different colors for the shirts.
Which design do you like? What colors would you prefer?
Let us know below and who knows, you just might see the shirt of your dreams up here in a few days!
I’m looking forward to another great time in Burton Texas. Camp For All. The first day of camp is September 5-7th. Everyone who is going should have all there information submitted by now. I hope so.
Again this year The Texas Neurofibromatomatosis Foundation is having their annunial NF Family camp. Again we are going to have a terrific time meeting our friends from last year, and I know we will make new friends this year as well. Horse back riding swimming games and more. The best part is meeting new friends and sharing stories. It’s going to be a great one and I hope to see you there. Who knows you may see someone playing his music with his newly formed band. I’m not saying you will have to come and see. Some you know might play the autoharp. Just maybe.
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
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!!!
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.
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. Read more »
My second year going to the Art Car Parade, and just like last year, I had a terrific time.
I also met a lot of people that was me last year and and new people that saw me on the news last week.
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!
I hope this link works. if not, go to
http://www.myfoxhouston.com and search for Reggie Bibbs.
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.
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!”
Another amazing day out at Minute Maid Park! Lou and I went to the Astros game today. We had a great time. The game was great and the Astros won! It was really nice to see so many nice people. Like Brandon, who saw me on TV and came up to introduce himself. Thank you for doing that!
I saw Cathy Clark, who was my bus driver when I was in school. Lets just say it was over 25 years ago when I used to ride the bus to school.
Cathy remembered me by name. I was so happy when she told me she use to drive me to school. Cathy works at the concession stand in Section 409 of Minute Maid and, I got to tell you, I’ve never been treated with more love and respect than from that entire food area!
I think Cathy is a supervisor or some other type of important person because she was definitely in charge! What a great representative for the Houston Astros staff. Cathy, you made me feel so special and it means the world to me! Hope both you and Brandon will be a regular on my blog. Thank you both for making my day!
After the game, Lou and I went to the fabulous McKee Street Bridge and took some photos. WOW!!! What a beautiful bridge and park! Lou’s friend, Kirk Farris, had single-handedly transformed this bridge and bayou area into a place that is totally cool, beautiful and peaceful! It’s just a few blocks north of Minute Maid Park on McKee Street just south of I-10.
Of course, taking all those photos at Minute Maid and McKee Street made us pretty hungry and thirsty so we went to the new Porch Swing Pub at Washington and Waugh in The Heights for crawfish!!! Man, oh, man, were they good! Lou had beer. I had Coke.
It was a beautiful day!
Lou and I are in the middle of what I thought would be a very difficult task: asking celebrities, artists and friends to draw a doodle for National Doodle Day benefiting NF!
Well, I’m happy to say it was very easy thanks to some very special friends! With the help of some special people who want a cure for NF as much as I do, friends from all over the country whipped out their writing instruments and doodled for NF. Some of them you may know like Sugar Ray Leonard. (SEE DOODLE ABOVE LEFT)
Some are friends of my friend, Lou. A big thank you to Lou and all of you who played a big part in this effort to Knock Out NF Once and for all. Take time to see all the doodles on my photo page and go the National NF Doodle Day website!
All doodles will be posted shortly onto ebay where you will be able to bid on your favorite NF doodle!!!
Bid high, soon and often and do your part to help raise money for NF.
Doodlers include Sugar Ray Leonard; designer Andy Dearwater; artist/gallery owner Dan Allison, stamp art artist Kim White; printmaking professor Peter Massing, illustrator Matt Loftiss; America’s Greatest Artists, The Art Guys; writers Lou Congelio and Matt Walsh; Lou’s daughter, Elena Congelio; yours truly, Reggie Bibbs; STANANDLOU’s Kate Wiggins and Rhea Diaz; and my nephew, Jordan Walker.
Baylor College of Medicine monthly genetic series to focus on neurofibromatosis at Health Museum of Houston
HOUSTON — (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 email@example.com
Tonight was another great night at the Houston Livestock Show and Rodeo!
I started out with the live stock show and all of the other fun things. Oh, my God! Did I enjoy the FOOD. Everything was to die for. Deep fried Oreos, steak burgers, foot-long sausage sandwiches, giant cinnamon rolls with lots of icing. But don’t take my word for it, check out the photos for yourself.
I went to the Rodeo to see Martina McBride. She was great and the music was terrific! She really sang her heart out. She sang all of her best songs and the crowd loved it. Of course, so did I. Martina loves Houston and she looks forward to her show here every year.
I know why she loves Houston. I feel it every time I go out. So many people here have been so kind to me. I’m thankful to be in a great city like Houston. It made me feel so good when people I never met came up to be today and spoke kind words to me. You will see them in my photos. People like that are heroes to me!
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.
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.
- 2008 Houston Highlights
- A MESSAGE FROM REGGIE
- abc news
- About Me
- ADDY Awards
- Astros Game
- Denise Terrill Golf Classic
- Emily's Name-My-Baby Contest!
- Favorite Places
- Friends of NF
- Friends with NF
- Greg Gorman
- Houston Art Car Parade
- houston astros
- houston livestock show and rodeo
- Houston Roller Derby
- Houston Texans
- International Festival
- Laurie Selzer-MNI
- M.D. Anderson
- Martina McBride
- McKee Street Bridge
- Medical Resources
- national doodle day
- NF Bulletin Board
- NF in the News
- nf inc
- Porch Swing Pub
- Some People
- Texas NF Foundation
- TEXAS RENAISSANCE FESTIVAL
- Valentine's Day
- Web Technology