neurofibromatosis cafe

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

An article about my friend, Ed Port, from Youngstown, Ohio!

beyondface_articleBy Denise Dick

A story on the township resident will air on CNN HLN Saturday through Monday.

AUSTINTOWN — Ed Port writes poetry, loves animals and enjoys cooking, but all some people see is his disease.

Neurofibromatosis type 2 causes severe tumors. For Port, 38, the tumors cover the left side of his face, obscuring his facial features and limiting vision in his left eye.

The Vindicator first wrote about Port and his condition in November. He’s since been in touch with plastic surgeons and other doctors and has received donations from a few people. Port has a Web site http://www.edneedsamiracle.com, but he is working to establish a nonprofit corporation to accept donations.

This weekend an interview with Port will air on CNN HLN, formerly Headline News. CNN conducted the interview last month.

A network representative said the show, “News To Me,” will air at 7:30 and 9:30 p.m. Saturday and Sunday and at 12:30 and 5:30 a.m. Sunday and Monday.

“You shoot it, we show it,” the network’s Web site says of the program. “‘News To Me’ is the world as seen through YOUR cameras.”

Vindicator chief photographer Bob Yosay shot the video of a CNN HLN reporter’s interview with Port.

Port hopes to raise awareness about the disease through the publicity. Continue reading

January 30, 2009 Posted by | neurofibromatosis | , , , | 10 Comments

They call me “Four-Eyes!”

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January 20, 2009 Posted by | neurofibromatosis | | 28 Comments

Dr. Packer Video from Carolyn Farb Endowed Lecture Series at M.D. Andersen Cancer Center

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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

WATCH VIDEO

January 15, 2009 Posted by | neurofibromatosis | | 13 Comments

ANOTHER GREAT STEAK NIGHT AT PJ’S & LOU’S!

3192833598_19995c7c5f_bThursday was another great Steak Night at PJ’S Sports Bar followed by a JAM session at Lou’s place.  First, after a long absence from PJ’s, we made our first visit of the year. It was great seeing John, Matt, Geo, Everett, William, PJ and a new friend,  Brieton.

After enjoying our great steaks, we went to Lou’s studio…I mean house, where we played our favorite songs, Ball and Chain, Do Lord, and I’m On Fire. We  may have the video up loaded soon. Also we have pictures of us playing. View the photos and watch for the video. Thank you Everett for some of the photos you took for us. MORE PHOTOS HERE

January 13, 2009 Posted by | neurofibromatosis | 21 Comments

My NF T-SHIRT from France!

3177673282_0f49b214a6_bMy friend Francis was nice enough to send me a t-shirt all the way from France. I’m  proudly wearing the NF FRANCE t-shirt. Francis also is a bloger here and he has is own blog page as well. He wrote about me in two of his blogs. We recently spoke on the phone and he, like all of us here, is spreading the word about nf and hope there will be a cure some day. There is always hope. The link to the site on the shirt is anrfrance.org If you would you can visit Francis blog. droitaladifference.blogspot.com/

You can use google translate if you don’t know French. It works really well. Some day I will visit France wearing my nf France t-shirt.

See all the photos HERE!

January 7, 2009 Posted by | Awareness, Friend, Just Ask!, neurofibromatosis, T-shirts | 15 Comments