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 <>
Date: December 27, 2008 2:56:15 AM CST
Subject: Hello Reggie from Ed Port

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

Ed Port

Youngstown Ohio

‘Someone can afford to help Ed’

Published:Sunday, November 23, 2008
Youngstown Vindicator

By Denise Dick

AUSTINTOWN — Ed Port’s facial deformity has limited his ability to secure a job, hampered him socially and affected his hearing and sight.

Port was diagnosed with neurofibromatosis type 2, which causes a growing tumor in his face, when he was 3 or 4.

“Between the ages of 7 and 19, I had 18 to 21 surgeries,” Port, 38, said.

Growth of the tumor has obscured his vision in his left eye, damaged his hearing and led to the removal of part of his jawbone. His health insurance considers the series of surgeries required to correct the problem cosmetic, however, and won’t cover them, Port said.

“What I need to find is a doctor who is capable of doing it, who is willing to do it,” Port said.

He also needs the money to pay for it.

He’s not sure of the cost, but it’s expected to exceed $60,000.

Michael Murphy, 33, a 1993 Boardman High School graduate, is using his artistry to help.

Murphy, an assistant professor at Georgia College and State University in Milledgeville, Ga., has created several portraits of President-elect Barack Obama in various media. One that’s available through Monday morning on eBay uses the shadows cast by 6,400 nails to form the incoming 44th U.S. president’s likeness.

Proceeds from the sale will go to Port.

A video about Port, as well as the portrait and more of Murphy’s work, may be seen at Murphy’s Web site,

Without the surgeries, Port’s tumor will continue to grow. He doesn’t know at what rate or how much damage it will cause.

“Only God knows,” he said.

Murphy and Port met through a mutual friend about two years ago.

Murphy said he’s been telling Port’s story for about a year and a half, after Port came to his studio asking him to create a video portrait of him to submit to “Extreme Makeover,” a television show that was canceled a few years ago.

“It suddenly occurred to me the opportunity to create a situation that, if realized, would be a perfect metaphor for the principles behind Obama’s campaign,” Murphy said. “It’s all about hope, change and making the world a better place. There are so many wealthy individuals out there. Someone can afford to help Ed.”

In the video, Port, who grew up in Andover, Ohio, says that when he was 26, his left eye, now mostly obscured, was still visible.

Socially, his life has been difficult. People often don’t take the time to know Port for himself, and young children are afraid of him.

“They think I’m a monster,” he said. “That upsets me.”

Surgery would help make him more acceptable to society, Port said in the video.

He was engaged to a “kind, sweet-hearted girl for awhile,” but she ended it.

“I think she was worried that if I couldn’t get the surgery, I would die,” Port said. “She was afraid that I would make her a young widow.”

The breakup happened two years ago, and he hasn’t really dated anyone since.

Port has a steady job now at a local call center, but many of his job applications have been rejected over the years. He attributes that to his deformity.

But Port says he has a strong faith in God, and he doesn’t feel sorry for himself. He has a small group of close friends, a job and his family remains in Ashtabula County.

Murphy, meanwhile, is not a political junkie — despite his choice of Obama as a subject.

The artist said he always considered politics kind of an illusion, with elections set up to give the American people the illusion that they live in a democracy. The Electoral College determines who wins a presidential election.

“I started off making a portrait of Barack Obama, and I listened to his speeches while I worked,” Murphy said.

He liked the then-candidate’s message about hope and change, and he chose to work with nails for a reason.

“It’s a very aggressive material on purpose,” Murphy said. “You have to exert great force to really make an impact that will get people to embrace change.”

Murphy was moved by the message and its effect on others. He voted for Obama in November, the first time he voted in a presidential election.

The nail portrait, started last January, took him about four months to complete. It’s available for sale on eBay.

Murphy earned his bachelor of fine arts from Kent State University and a master’s of fine arts from the Art Institute of Chicago.

He has also created Obama portraits in pastel and a sculpture of high tension wire. He doesn’t reveal his precise methods for creating art.

“I combine traditional media and digital media and come up with a new alternative,” he said.

While he lists both glass and light as his favorite media, Murphy says he uses whatever he can get his hands on.

“When you’re molding clay, you’re not actually molding clay, you’re molding light and shadow,” Murphy said.

Much of his work looks much different depending on the viewer’s angle.

His depictions of many people appear abstract up close but become clearer from a distance.

“I like to say that it straddles the border between abstract and realism,” he said.

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


  1. Ed is a very nice young man. I will be contacting him soon. I will keep you all up dated. I think it would be nice if you all would send him a encouraging email mail.

    Comment by Reggie Bibbs | December 27, 2008 | Reply

  2. Here is his email:

    Comment by Lou | December 27, 2008 | Reply

  3. I hope one of the doctors here can direct Ed to someone that can help.

    Comment by Reggie Bibbs | December 27, 2008 | Reply

  4. Good Morning to all. Has anyone here wrote to Ed? Ed wrote me back. He is a really nice guy. I hope you would send him a note of encouragment. I’m going to stay in contact with him.

    Comment by Reggie Bibbs | December 28, 2008 | Reply

  5. I wrote to him yesterday. It would be great to have him on the blog and we could talk about some options he may have.

    Comment by Lou | December 28, 2008 | Reply

  6. Hi there Got most of my stuff done Just emailed Ed whats going with Everybody

    Comment by Shelley | December 28, 2008 | Reply

  7. Hi Shelley,

    Thanks for writing Ed. I will try to get back on here later. I got lots of starbucks stuff.

    Comment by Reggie Bibbs | December 28, 2008 | Reply

  8. Thank you Reggie and Lou for adding my story to the blog. I hope to chat with you soon.

    Comment by Ed Port | December 28, 2008 | Reply

  9. You are very welcome Ed. We will chat soon.

    Comment by Reggie Bibbs | December 28, 2008 | Reply

  10. HI There Everybody I had 2 cups of coffee whats going on

    Comment by Shelley | December 29, 2008 | Reply

  11. Hi Shelley, Have you heard from Brian? Haven’t see him here.

    Comment by Reggie Bibbs | December 29, 2008 | Reply

  12. No I havent Reggie

    Comment by Shelley | December 29, 2008 | Reply

  13. Hey Reggie Im on my 3rd cup of coffee

    Comment by Shelley | December 29, 2008 | Reply

  14. Everybody sleeping

    Comment by Shelley | December 29, 2008 | Reply

  15. I have a anouncement: On 12.31.2008 at 11:59:59 pm the year 2008 will be cancel due to..lack of interest and tired of it.

    Comment by John P | December 29, 2008 | Reply

  16. I’ll drink to that.

    Comment by Reggie Bibbs | December 29, 2008 | Reply

  17. I Hope someone will help Ed! NF is very crual disease. So I try to explain what is the neurofibromatosis to the public also I talk to a French neurofibromatosis forum. Many people need to express their suffering. I think only a person with NF can understand people with NF

    Comment by Boyer-Madrieres.Francis | December 30, 2008 | Reply

  18. Thank you Francis for you comment. I hope some here will see his story and help Ed. Francis we should all meet in the nf chat area some time.

    Francis I’m at md anderson today. I will be here most of the day. Sorry I missed your call. I will be home this afternoon around 4:30pm Houston time. I would love to talk to you. Mom said she spoke to you.

    Comment by Reggie Bibbs | December 30, 2008 | Reply

  19. Hey Evorybody, Francis called me just before I left
    md anderson. He was calling from France. He is really excited about what is going on with JUST ASK! Francis sent me a t-shirt for nf in FRANCE. Iy is a really cool shirt. I will post it

    Comment by Reggie Bibbs | December 30, 2008 | Reply

  20. {{{{{{{{{EVERYBODY}}}}}}}}}}

    Comment by Shelley | December 30, 2008 | Reply

  21. Its 2:30am, at work. If I fail to get another chance, I will do it now since I may be out later tonite, wish every one a Happy New Year and 2009 will be a good year for us.

    Comment by John P | December 31, 2008 | Reply

  22. Thank you John. I hope to be here on the blog later today. I will try to get on Chat later tonight.

    Comment by Reggie Bibbs | December 31, 2008 | Reply

  23. HAPPY NEW YEAR Everybody

    Comment by Shelley | December 31, 2008 | Reply


    Comment by Ed Port | December 31, 2008 | Reply

  25. Happy New Year to you all. Happy New Year Ed.

    Comment by Reggie Bibbs | January 1, 2009 | Reply

  26. Happy whatever!

    Comment by Lou | January 1, 2009 | Reply

  27. I just ran across your site from flickr when I was tagging some pictures “neurofibromatosis” and got curious if anyone else used the same tag. Besides my mother, I have never even so much as spoken to someone else with NF. Never had a chance to. I knew I wasn’t so to speak but it’s nice to know I’m not alone.

    Have a wonderful new year :o)

    Comment by Edie | January 1, 2009 | Reply

  28. I think I do use NEUROFIBROMATOSIS when I post my photos, as well as TEXASNF, and I may use another term, maybe NF or TNFF. I will have to check next time I am on flickr. Oh, hope you will have a Happy New Year.

    Comment by JohnP | January 1, 2009 | Reply

  29. Texas NF Foundation, TNFF, and depending on the event, I may mention Camp For All or CFA, Symposium, etc

    Comment by JohnP | January 1, 2009 | Reply

  30. Hi there Everybody whats up Im doing stuff wondered what yall were doing

    Comment by Shelley | January 1, 2009 | Reply

  31. Edie,
    Thank you for the visit to my blog. I’m happy to be added to your friends list on flickr.

    Comment by Reggie Bibbs | January 1, 2009 | Reply

  32. Dear Friends
    I had a great event: I phoned to Reggie. Happily I had with me Abby( American student, friend of my niece). She helped me because I only use to listen to BBC accent. I have commun point with Reggie I live of the south of my country and so so I I have a south accent.
    Forgive me Reggie I didn’t understand your accent. Abby explained me the raison ( she has a standard accent)
    I’m very glad you like the french tee-shirt.
    As Abby and me explained you, you’ll receive next week my photo with the yellow tee-shirt.
    To day I’m sad Abby comme back to America (Ohio) Kind regards Francis

    Comment by Boyer-Madrieres | January 2, 2009 | Reply

  33. Good morning, Francis. Great to hear you and Reggie are connecting. It’s really nice having you and Ed be consistent bloggers on the site. This is what the blog was meant to do: connect people with NF so they can share information, talk about NF and just have fun! Can’t wait to see the photo of you in the yellow shirt. When you take the photo, give us a big smile!

    Comment by Lou | January 2, 2009 | Reply

  34. One more thing, Francis. What part of Ohio is Abby from? Ed and I are from Youngstown which is in northeast Ohio by Cleveland.

    Comment by Lou | January 2, 2009 | Reply

  35. Edie, I went to your blog. Looks like you’re just getting started. If you need any help, just let us know. We will put a link to your site on our blog. If you could do the same for us, it would be appreciated and help both of our blogs. Good luck on quitting smoking!!! : > )

    Comment by Lou | January 2, 2009 | Reply

  36. Hey there Yall did everybody have a Happy New year ?

    Comment by Shelley | January 2, 2009 | Reply

  37. Hello to all. I’m just getting on here tonight. I have been reading and lots of good comments. Edie My mom and sister are doing the same thing. Giving up smoking. This is the 3rd day. They started before New Years.

    Comment by Reggie Bibbs | January 2, 2009 | Reply

  38. Good evening everyone

    Comment by Ed Port | January 3, 2009 | Reply

  39. Abby live at Toledo. I received a mmessage from her. Her travel to home was well. She will come to France on September. She wish to do some studies in France
    About the tee-shirt I’ll send some photos next week. The cultural center will be open so I will be able to do that I want: photos, blogs, etc Kind regards Francis

    Comment by Boyer-Madrieres.Francis | January 3, 2009 | Reply

  40. Francis, It was really nice talking to you on the phone. I hope to do that more often. Than will be great when you can get to the computer. I will watch for you. Oh I talk to Ed as well. Great that both of you are on the blog. I will be here more then I have in the pass.

    Comment by Reggie Bibbs | January 3, 2009 | Reply

  41. HI Ed and Everybody

    Comment by Shelley | January 3, 2009 | Reply

  42. YO Everybody Yall asleep or pigging out ?

    Comment by Shelley | January 4, 2009 | Reply

  43. Francis, Ed, JP, Shelley, Lou, Bart, anyone blogging today. We have to remember to watch for Ed’s interview on CNN. Leave the date here Ed. We will blog about it.

    Comment by Reggie Bibbs | January 5, 2009 | Reply

  44. Hello everyone

    As of right now it is to air at theses times. CNN HLN (formerly Headline News) The show is called NEWS TO ME it airs at 730p / 930p / 1230a / 530a Sat and Sun EASTERN time. So it will be airing a total of 8 times

    Comment by ed port | January 5, 2009 | Reply

  45. Ed, wow, now I can say I know somebody really famous and important, not someone who just thinks they are important, if you know who I mean!

    Comment by Lou | January 5, 2009 | Reply

  46. Francis, Toledo is completely across the state of Ohio from where Ed and I live (Youngstown, Ohio). You should post a photo of her so we can place a face with her name.

    Comment by Lou | January 5, 2009 | Reply

  47. Thanks Ed,we will be watching.

    Comment by Reggie Bibbs | January 5, 2009 | Reply

  48. Coment #45, what are you trying to say LOU!

    Comment by Reggie Bibbs | January 5, 2009 | Reply

  49. Francis, Great blog. Thank you for the kind words on your blog. About my Texas accent. Pretty weak to me. But if you say it’s strong I will agree, I told my mom about your strong French accent. Talk about a chick magnet I could be with it. I will send you a photo wearing the French Neurofibromatosis t-shirt.

    Comment by Reggie Bibbs | January 6, 2009 | Reply

  50. HI Everybody Im on my 3rd cup of Starbucks

    Comment by Shelley | January 6, 2009 | Reply

  51. Dear Reeggie
    Yes, you are right I have a strong french accent and also a South french accent.
    Let me narante you a funy story: Abby came three times to Rodez and stays every time one month! Her new french teacher is french nationality. She laughted when she listened to Abby, and guessed where she spends her vacation!!! My American friend speaks with a litle south french accent.
    I published your photo in my blog. I found it in your site.
    My friends and association will be very proud to se you with the French neurofibromatosis association. Kind regards Francis

    Comment by Boyer_madrieres.Francis | January 7, 2009 | Reply

  52. Francis Lou is going to take a few more pictures of me wearing the shirt at the office today. You can get them from my site and I will also send you some photos.

    You think I can pick up a strong French accent if I was to visit France?

    Comment by Reggie Bibbs | January 7, 2009 | Reply

  53. Guess it does not make any diffence if you live in South France, Germany, Texas you speak with a southern accent.

    Comment by JohnP | January 7, 2009 | Reply

  54. Hello everyone Its snowing here today in Ohio. I can can send you all some snow if you want. :.)

    Comment by ed port | January 7, 2009 | Reply

  55. No thanks, none needed here.

    Comment by JohnP | January 7, 2009 | Reply

  56. HI Everybody I need a cup of Starbucks Lou I know 3 famous and important people Reggie Ed and me

    Comment by Shelley | January 8, 2009 | Reply

  57. anyone here today

    Comment by ed port | January 10, 2009 | Reply

  58. Hi Ed,

    I just watched you on the HLN network. Great job and I hope that everything works out for you. Keep us updated.

    Comment by Reggie Bibbs | January 10, 2009 | Reply

  59. Thank you Reggie and Lou for watching. I hope that more people that come here are watching too. I had one boy e-mail telling me that I am his hero. :.) spread the word that tonight is the last night. 9:30 pm EST Then this Monday at 12:30 am EST and the last showing is 5:30 Am EST I hope more people learn as to what NF is

    Comment by ed port | January 11, 2009 | Reply

  60. Great story, Ed! Did you get many hits to your website after the story ran? It was good talking to you yesterday. Can’t wait to meet you in person the next time I’m in Youngstown. With the way the economy is, who knows when I’ll be able to afford to fly up there!!!

    Comment by Lou | January 11, 2009 | Reply

  61. Ed I watch you again on TV tonight. Mom and my sister watched with me. They told me to say hello to you. I know people will be more understaning the more they see your interview. You spoke really well. I think I missed your call the other day. I will have to give you a call. You are a HERO. Great things are coming your way,

    Comment by Reggie Bibbs | January 11, 2009 | Reply

  62. Good Evening Everyone Hope you all had a great weekend. Reggie tell your mom and sister that I said hello.

    Comment by Ed | January 18, 2009 | Reply

  63. Ok Ed, I will tell them. Expect a call from me soon. I hope all is well with you. That is great that your website has gotten so many hits.

    Comment by Reggie Bibbs | January 19, 2009 | Reply

  64. hello everyone. I have not herad from you Reggie. I hope all is well. Give me a call Lou I will be sending that disc out this week. I think I had a touch of the flu been sleeping alot. Talk to you all soon Ed

    Comment by ed | February 7, 2009 | Reply

  65. I have a dear childhood friend w/ NF,her mother has it,her daughters have it.for her family,the effects of the disease seem to be less with each generation,though my friend Shelly has it much worse than her mother. Several members of her mother’s family have it to varying degrees.
    I’ve watched her pain,people’s horrified reactions and their cruelty. But I’ve watched her courage to go out and put herself in the public,even if they turn away. She’s been turned down for jobs due to her appearance.But if anyone gets close to her and sees her beautiful heart,they never notice her disease.
    She’s a fighter and I’m blessed for having known her all these years.

    Comment by Michelle | March 2, 2009 | Reply

  66. That is great! Michelle! Keep up the good work in supporting her.

    Comment by Reggie Bibbs | March 2, 2009 | Reply

  67. Found this website while searching online for support groups and information. I found out recently that my little sister and my stepmother have some degree of NF, although not enough that its visible in public. Also my stepfather of the last 13 years, Lud, has NF to a larger degree, similar to the picture above. He has slowly been going through these “cosmetic” surgeries to improve his quality of life, and recently had a large tumour removed from his back. However it has spread to his lungs, and he doesn’t have a whole lot longer. Lud is one the smartest men I know, and extremely kind. For all of you living with this, good luck in any of your endeavoursm and long happy life to you all.

    Comment by Leo Milligan | May 4, 2011 | Reply

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