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

It is that time of year again. The Texas NF Foundation, is making it possible for nearly 200 persons to have a great weekend at Camp For All. This weekend will be our yearly camp for persons with nf, along with family and friends. The one time most of us get to see each other. I’m looking forward to horse back riding, Zip line, which I hear is lots of fun. Fishing, petting zoo, and Lots of talking with new and old friends. Also looking forward to sharing with you photos to all who can’t make it to camp this year. Let’s talk about camp this week. What do you look forward to this weekend at Camp For All.

Texas has been lobbying since 1997 to ensure that NF research continues to make progress. Since that time, over 200 million has been contributed to NF research programs. Within the last few years, research funds have steadily been decreasing. However, today I am proud to announce that they are “back up!” The House Appropriations Committee just ruled that another 25 million will go towards the 2010 Department of Defense NF Research program. This is a tremendous victory since last years projects only collected 10 million. That’s a 250% increase!
Thanks to all of you for writing your Representatives, It worked! And thanks to Reggie Bibbs, Sandra and Emily Parker, Dr. Slopis and Dr. Moore for taking the time to personally visit Representative Sheila Jackson Lee.
HOWEVER – The 25 MILLION IS NOT SECURED – YET. We still need YOUR HELP to SECURE THESE FUNDS! Please email, or better yet, hand write and fax a personal letter asking that our Senate approve the House Appropriations proposal of 25 million towards NF research. Thanks again, together we are making a difference!

Senator John Cornyn FAX: (202) 228 – 2856
Compose an online letter to Sen. Cornyn
Senator Kay Bailey Hutchison FAX: (202) 224-0776
Compose an online letter to Sen. Hutchison

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

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.

Click here to see photos from today!

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.

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).

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 www.nfinc.org.
For more information about National Doodle Day, contact email doodleday@nfinc.org

View celebrity doodles

Well, tomorrow, Feb. 28, 2008, kicks off the 35th Annual Houston Livestock Show & Rodeo with the World’s Championship Bar-B-Que Contest and I’m going to be there enjoying my fair share!

Yes, I plan to be there eating all the que I can stand. I hope to get lots of photos to share on my blog and flickr page. It’s going to be a fun night.

Anyone else going to the cook off or Rodeo? (more…)

On Valentine’s Day, I went to Comcast. I had a problem with my cable box and I took it back to Comcast. A customer service worker waited on me. Denise was very nice and helped me with my problem. It was then that she told me how happy she was to see me. And that she had seen me on TV. All of the customer service people were just as nice as Denise. I had to go back today so I asked if I could take their photo to put on the blog as a way to say thank you for being so nice. It’s nice to know that a company as big as Comcast can have employees as nice and personable as Denise and her friends. Please, if are in you the area, show some love to the great job the ladies are doing at the Bellaire location. Thank you Denise. And of course Phelisia, Patricia, and Jennifer. What a Sweet Heart of a Day for me!

WELCOME BACK, JERRY TURNER!
Hey Reggie,
I made it!!!!For everyone who has never experienced a 17 hour non-stop flight……Don’t do it!!! I thought it would be worth it not to stop in Europe on my way back, but it’s not. At some point in there you need a break. With about 4 hours to go in the flight I was in absolute misery. I’ll give you a buzz tommorrow.
Jerry T

I’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.

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!

I wanted to let you know we are home from a TERRIFIC weekend at a
wonderful place called CAMP FOR ALL, In Burton Texas. It is an amazing place for persons with disabilities. I would give this place a five star rating. A big thank you to the kind staff. It was my first time and will NOT be my last time. Looking forward to next year. I also want to thank the Texas Neurofibromatosis Foundation for Helping my family to be a part in the Fun. Let spread the word and try to have more campers next year. I hope you will join us next year. You will love it. PHOTOS

Hey guys and gals Just want to let you know where I will be this weekend. Burton Texas for the annual NF Camp. It’s been years since my last NF camp, and I’m happy to have this chance to go this year. I will get to see a lot of my friends from the other times I have gone. If you are not able to attend, don’t worry I plan to take lots of photos that you can see here and on my photo page. And all of you that can’t make it this year I hope you will plan to come next year. So lets talk camp today.