neurofibromatosis cafe

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

Tumornators Search for Cure with Rock 4 Research Concertatosis

jeffThe 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.81ba489f-2ae5-4d2f-ba93-c855cbc2b7d4

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.r4rpics

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.

mattFrancoeur 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.

For more information, please visit www.rock4research.com or www.tumornators.com .

Contact: Chad Leathers chad@tumornators.com     706.366.7321

Contact: Brittany Raines rainesbr@uga.edu     678-522-6534

November 19, 2008 Posted by | Awareness, ctf, Fundraising, neurofibromatosis | , , , , , , , , | 29 Comments

URGENT!!! NF NEEDS YOUR HELP!!!! Deadline: Wed, April 9!

Just received this from my friend, Dr. Moore, at MD Anderson. I’m writing my letter now! I hope you can too! Here are 2 links that will make it real easy for everyone to send a letter!

Or, scroll down to the bottom of this blog and you’ll find ready-made letters to key subcommittee members . All you have to do is replace Lou’s Name and Address with your own then FAX it to the number on the letter. It’s that easy! Continue reading

April 7, 2008 Posted by | neurofibromatosis, nf | , , , , , | 67 Comments

Reggie Bibbs JUST ASK! ONLINE STORE NOW OPEN

cup8x10.jpgI’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.

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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!

December 22, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Adgiant, Appearances, Awareness, Friend, Friends of NF, Fun, Fundraising, Just Ask!, neurofibromatosis, News, NF1, NF2, Reggie's Search Machine, T-shirt, Texas NF Foundation | , , , , | 141 Comments

Barack Obama Doodle Earns $2,000 for NF Research!!!

A doodle by Senator Barack Obama sold for over $2000 on eBay today. The drawing, featuring fellow senators Harry Reid, Dianne Feinstein, and Edward Kennedy, was sold as part of the National Doodle Day initiative. National Doodle Day sells celebrity sketches to raise funds for Neurofibromatosis, Inc.

May 30, 2007 Posted by | Awareness, Fundraising, neurofibromatosis, Research | , , , , , , , , | 5 Comments

Laundry Day Book Proceeds benefit CTF – The Children’s Tumor Foundation!

Jacquie Rogers

People have been washing clothes (or furs) for a long time. Most sites say that humans finally got a clue that good hygiene made for better health. I’m of the opinion that people liked to be comfortable then as now. Their skin chafed and got rashes just like ours does, so it stands to reason that they’d want to rid themselves of particulate matter just as we do. Take a look P&G’s overview of laundry methods from prehistoric times until the present for good information on products used, and when.But, lazy person that I am, I’m more interested in gadgets, so let’s start a little later in the game…say, the 1800s. Continue reading

May 27, 2007 Posted by | CTF.ORG, Fundraising, neurofibromatosis | , , , , , | Leave a comment

Disfigured man with neurofibromatosis launches “Just Ask!” campaign!

Reggie Bibbs has lived with neurofibromatosis (NF) all his life. NF causes tumors to grow throughout the body sometimes causing pain, disfigurement and even death. Because of his disfigurement, Reggie has led a fairly sheltered life leaving the house only to go to places where people knew him. Well, until now!

read more | digg story

May 21, 2007 Posted by | neurofibromatosis | , , , | 22 Comments

Reggie Bibbs – “This is NF”

Reggie Bibbs, Houston, Texas, has neurofibromatosis. In this fun and informative 60-second television public service announcement, Reggie explains what it’s like living with neurofibromatosis but, more importantly, how he lives with it. He is funny, upbeat and very courageous. An inspiring video made by an inspiring man!

read more | digg story

May 21, 2007 Posted by | neurofibromatosis | , , , | Leave a comment

WELCOME TO MY BLOG AND MY NEW FRIENDS AT WWW.CTF.ORG AND THE NF EUROPEAN MEETING!

Do you think the Heritage Building makes me look fat?Hi Everyone,If you are visiting this blog for the first time, welcome!

The purpose of this blog is to serve as a meeting place for people who have NF, or who knows somebody with NF or is just interested in learning more about NF. But no matter how we are connected to NF or this blog, I know we all share the same goal: to find a cure. Continue reading

April 28, 2007 Posted by | A MESSAGE FROM REGGIE, CTF.ORG, Links, neurofibromatosis, News, Texas NF Foundation | , , , , | 14 Comments

The Children’s Tumor Foundation is talking about us!!!

ctf-logo-bb.jpgA friend sent me this link and I was blown away!!! They’re talking about me and my website. Here’s the link to the discussion group. I’m going to respond to their questions today! Maybe you can join me and help me out. Please?!! The Children’s Tumor Foundation is one of the leading organizations in the world involved in neurofibromatosis research and treatment.

http://www.ctf.org/cgi-bin/bb/ultimatebb.cgi?ubb=get_topic;f=1;t=008133

April 26, 2007 Posted by | neurofibromatosis | , , , | 9 Comments