neurofibromatosis cafe

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

My new Friend, Ed Port, needs your help.

11212008-wdl-port-dFrom: Ed Port <gbg@ameritech.net>
Date: December 27, 2008 2:56:15 AM CST
To: reggie@reggiebibbs.com
Subject: Hello Reggie from Ed Port
Reply-To: gbg@ameritech.net

Thank you for the e-mail MIke forward it to me. How did yo hear about my story?  I fist saw you on the O about a year ago when I was flipping thou the TV chs   Mike has been trying to help me get my story out.  I ws chatting with friend today on yahoo that lives in  Romania who said he would put my website on his blog to help to get the word out and to help rasie funds.

I would like your imput on anything that would help make the website better.  I wike your store very much it would great to speak to you

http://www.edneedsamiracle.com/

Ed Port

Youngstown Ohio Continue reading

December 27, 2008 Posted by | Awareness, Benefit, Friends, Medical Resources, neurofibromatosis, NF1 | , , , , , | 67 Comments

Carolyn Farb Endowed Lecture in Neurofibromatosis

the-fivesome

Reggie Bibbs, Dr. Bart Moore, Carolyn Farb, Roger Packer, M.D. & Dr. John Slopis

The Carolyn Farb Endowed Lecture in Neurofibromatosis,

“Molecularly-driven Clinical Trials for Children and Young Adults with NF1″

Speaker: Roger Packer, M.D.

Executive Director and Chariman, Dept. of Neurology, Childrens’ National Medical Center, Washington, DC

Today was the Carolyn Farb Endowed Lecture Dealing with Neurofibromatosis, Roger Packer M.D. Spoke on Neurofibromatosis type1 and other topics, what could be good news for those of us that are affected by Neurofibromatosis. Lou videod if so we hope to have the video on the site soon.

You can see what Doctor Packer spoke about. I was there and I met the doctor along with Carolyn Farb, who made it possible for the NF clinics at MD Anderson. I know I felt great after hearing the lecture. Maybe you will as well. When we load the video watch and comment here. It may take time to get the video on, but I know we will have it for you. Thanks

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December 15, 2008 Posted by | Awareness, M.D. Anderson, Medical, Medical Resources, News, NF1, Research | 17 Comments

Baylor College of Medicine monthly genetic series to focus on neurofibromatosis at Health Museum of Houston

logo.gifHOUSTON — (March 4, 2008) — A discussion on neurofibromatosis, a genetic disorder that causes tumors to grow on nerve tissue, producing skin and bone abnormalities, will be presented in a public forum March 25 at The Health Museum of Houston.Neurofibromatosis is one of the most common genetic disorders, occurring in approximately one in 3,000 births.

The forum will feature genetic expert Dr. Maria Blazo, assistant professor of family and community medicine and molecular and human genetics at Baylor College of Medicine in Houston. The parents of a child with neurofibromatosis are also scheduled to speak.

Organized by BCM and Texas Children’s Hospital, the event is part of a monthly “Evening with Genetics” lecture series organized by BCM’s Department of Molecular and Human Genetics. The series offers current information regarding care, education and research about genetic disorders.

The program is free and open to the public. It will be held at 7 p.m. at The Health Museum of Houston, 1515 Hermann Drive. For more information or to register, contact Susan Fernbach at 832-822-4182 or fernbach@bcm.edu

March 11, 2008 Posted by | Awareness, Medical, Medical Resources, neurofibromatosis, Research | 49 Comments

Dr. Bart Moore say’s “JUST ASK!” with his new mug and state-of-the-art, homeopathic “JUST ASK!” forehead patch

bartaski.jpgGuess who visited my on line store recently?

Yep, my good friend and also doctor, Dr. Bart Moore of MD ANDERSON CANCER CENTER. He is proudly displaying the items that he purchased at the “Just Ask!” online store a short time ago. Not only is he a supporter of NF and “Race Across America for NF”, he’s also a very cool guy to have on your side.

Could you get your doctor to take a photo like this? I don’t think so! What a great sense of humor. Thanks for sharing your photo Dr. Moore! You’re the best!!!

Check out what people had to say about Bart at my Flickr account.

January 22, 2008 Posted by | Awareness, CTF.ORG, Friend, Friends of NF, Fundraising, Just Ask!, M.D. Anderson, Medical Resources, neurofibromatosis, Texas NF Foundation | , , , , , | 281 Comments