neurofibromatosis cafe

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

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

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

June 29, 2008 Posted by | neurofibromatosis | 16 Comments

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

June 27, 2008 Posted by | neurofibromatosis | , , , , , | 6 Comments

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.

June 26, 2008 Posted by | Friend, Friends, neurofibromatosis | 22 Comments

Houston NF Pizza Party, July 12!

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)

June 22, 2008 Posted by | Friends, Fun, neurofibromatosis, Texas NF Foundation | , , | 10 Comments

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. Continue reading

June 18, 2008 Posted by | Awareness, neurofibromatosis, News, Texas NF Foundation | , | 9 Comments

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

June 9, 2008 Posted by | neurofibromatosis | , , , , , , | 17 Comments

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!

June 2, 2008 Posted by | Friends, Friends of NF, Houston Roller Derby, neurofibromatosis | , , , , , | 33 Comments