neurofibromatosis cafe

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

TEXAS NEUROFIBROMATOSIS FOUNDATION AND CAMP FOR ALL

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.

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August 28, 2008 Posted by | Awareness, Friend, Friends, neurofibromatosis, NF1, Texas NF Foundation | 13 Comments

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)

August 18, 2008 Posted by | neurofibromatosis | 20 Comments

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!!!

August 11, 2008 Posted by | neurofibromatosis | 12 Comments

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!!!

August 7, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis, News | , , , , , , , , | 22 Comments