Neurofibromatosis Cafe A place to talk, have fun and share.

Let us not for get  on this  Independence Day, weekend that men and woman are fighting for our freedom here in the United States. Some have lost there lives for our freedom.  In Honor of our troops and anyone in the arm forces, that are away from home on this day. We salute you, and your families, and thank you for  your bravery.

Who says life isn’t always fair? Well, it is in this case. This morning when I was awakend by the alarm clock, I never expected that I would have the honor of having a photo op with the Houston Texans Cheerleaders. The photo shoot was taken at VT2 Studios. The Cheerleaders took time to have a few photos taken with me. This really brightens my day. Stay tuned maybe you will see more photos added as we hope to take more. Remember to Support and Cheer for our home team.

GO Texans, You have my support!      SEE ALL THE PHOTOS

Fans, we so appreciate you. Last night was such an exciting night of play that ended in a way none of us could have expected. We are so sorry for the inconvenience and the disappointment of the night ending short. It was a huge let-down for us as well, and HRD is working with Kicks to figure out how to handle the situation. Hold onto your tickets and check back here for updated information.

Please come back and see us! We love and need our fans!

If you have any questions, please contact us at webmaster@houstonrollerderby.com

Houston Roller Derby

PHOTOS FROM TONIGHT’S MATCH

The fire marshall shut us down in the middle of the second bout! Too many people!!!!!! A testimony to the fact that Houston Roller Derby is rapidly gaining a following. Maybe we need to petition the city to build us an arena.

Dear Reggie,

I am writing to you because my company, Gigantic! Productions, is working on a new episode of the documentary series “True Life” for MTV. In this particular episode, we are focusing on young people suffering from Neurofibromatosis. We are currently looking for one or two more individuals to feature in the show. During the course of our research, we found you. We were wondering if you might be willing to share your story with us. We were also wondering if you would be willing to share the casting announcement (pasted below) with your online community, your friends, family, and doctors that you know.

If you have any questions, please do not hesitate to write to me. I greatly appreciate your taking the time to look this over. Yours sincerely, Lorrie Grace McCann

True Life: I Have Neurofibromatosis

Are you living with Neurofibromatosis? Do you have visible tumors or spots on your skin that you wish you could get rid of for good? Were you recently diagnosed with NF, or have you had it as long as you can remember? Are you planning on having surgery to remove a tumor or undergoing treatment to stop its growth? Is NF causing problems for you at school, at work, or in social situations? If so, MTV wants to hear your story. If you appear to be between the ages of 16 and 25, please email casting@gigantic.tv with the details. Please include your name, location, phone number and photograph if possible.

Lorrie Grace McCann
G I G A N T I C !  P R O D U C T I O N S
145 Hudson Street | Suite 200A | New York, NY 10013
ph: 212.979.7227 ext. 102 | www.gigantic.tv

“louise took ill again early thursday morning she made the choice not to have medical intervention she passed away at 4.15 on thursday afternoon. she was so brave and had all our family with her and her two best friends.”

- Tracy Cunningham, Louise’s aunt

wee lou’s Facebook page

photos youtube

wee lou makes the decision of her life

The above entry was posted on Monday, July 28th, 2008 shortly after Wee Lou was informed of her medical options.

13 smackeroos!!!

See all the photos here!

Yes Lou and I went to Sam Houston Race Park yesterday. We had a lot of fun. My first time there and I met a lot of nice people. Yea it was  13 smackeroos. I think if it at 23 dollors. I laid down 10, and got back a $20 and 3 ones.  So it was $23.  Oh didn’t have to deal with the heat, we had a sweet. Nice and cool there. Enjoy the photos, I have 13 bucks, oh I mean $23 bucks to spent.

We had a great Music Nite last Thursday Nite! We decided we needed to work on our music more, especially now that we have a new member to the group, writer/composer/musician, Mark Sansoucy.

Mark premiered the song he wrote, “Just Ask!” last Thursday and it was killer. With just a little more practice, this could be the Neurofibromatosis National Anthem!

WATCH THE VIDEO

SEE THE PHOTOS

Another nite at Lou’s.  Last night steak nite,  became Music and Pizza nite.  It was quite different from our regular Thursday nite.  All of the guy’s though it would be a good idea to work on our  music and eat pizza.  Mark Sansoucy new to the Reggie Bibbs Orchestra, alone with the regulars William Hughes,Matt Jones, and Supporters Geo Austin  and Lou Congelio.  Our friend  wrote a song that  we loved. Mark was  inspired by JUST ASK, to write a song. The name of the song?   JUST ASK. You will enjoy it as much as I do, I’m sure of that. We hope to have the photos and videos  on the blog soon.  I would love to hear your thoughts on the idea. And I know I can look forward to terrific comments of the music.

Download Lyrics to “Just Ask!”

Watch the video.

Just Ask (A Song for Reggie Bibbs)
Music and Lyrics by Mark Sansoucy

Just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello

I see people staring at me in restaurants
When I’m hanging out with my good friends
Yes, they see the way I look
And they get a little spooked
But that’s because they don’t know what I have

So, just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello

Pull your chair on up and come on over
I don’t bite, but sometimes my friends do.
Yes, we like to clown around
When we hit the town
But just like you they stepped on up and asked

So, just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello

Living a life like mine it isn’t easy
Sometimes I don’t want to leave my house
But I can’t live in fear
For those who hold me dear
Cause they know it’s what’s inside that really counts

So, just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello
All you have to do is say Hello

This is a blog that all School Students will want to comment on, as well as parents. It is that lovely time of year again. YES! School is out for the summer. woo hoo.  Lets talk about some of the fun things we can suggest for those who don’t have a clue of what to do for the little ones who have all this time to spend at home. And for those of us who have nieces and nephews that want something fun to do, post it here.  Something that will keep them busy and the uncle happy because they are happy having so much fun.  See then everyone is happy all summer long.