neurofibromatosis cafe

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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

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