Reggie Bibbs

SEE ALL CELEBRITY DOODLES AT DOODLE DAY USA

Reggie Bibbs is a highly inspirational man living in Houston, Texas. He was born with neurofibromatosis (NF), a genetic disease which causes him to develop tumors on his body. NF can be a subtle disease, but in Reggie’s case it has left him with a disfigured face. After years of public frustration, he launched a unique one-man campaign to call attention to this disease.

“I have neurofibromatosis. It’s a disorder that causes tumors to grow along my nervous system. In my case, it’s fairly disfiguring. When I would go out in public, people would stare or, worse, walk away. So I came up with an idea for a t-shirt and the rest, as they say, is history.”

With the help of a friend at a local advertising agency, Reggie Bibbs created a t-shirt that would invite people to come up and talk to him about his disorder. “I figured the more they knew about my disease, the more they would understand me.”

“When Reggie called me with the idea for a t-shirt that read, ‘Just Ask’, I literally had tears in my eyes, said long-time friend Lou Congelio, president of STANANDLOU Advertising. The idea was so simple and so powerful that I immediately offered him a position in the company.”

The t-shirt features on the front an abstract outline of Reggie’s face and, on the back, large type that simply says,’JUST ASK!’. Also included on the back is the url for Reggie’s website, www.reggiebibbs.com.

Today, Reggie is also on MySpace and Facebook and has an online store on his website. He’s been interviewed by Wikinews too.

Earlier this year, STANANDLOU and Reggie won 2 Gold ADDY Awards, one silver ADDY, and a Special Judges Award for Public Service Adversiting for their new “Just Ask” ads!

Reggie said, “I am thankful that the work here on the Just Ask campaign is getting noticed. More people will learn about NF as we keep pushing forward. Thank you all for supporting the site with your visits.”

On April 14, 2009, the Just Ask Foundation became exempt from Federal income tax under section 501(c)(3) of the Internal Revenue code.

To learn more about NF and Reggie, visit Reggie’s award-winning website and join him and his friends at the Neurofibromatosis Cafe.

Mari Garcia

Webmaster

Gillian Andersen Website
Posted in Fundraising, neurofibromatosis Tagged: doodle day usa, national doodle day ]]> http://reggiebibbs.wordpress.com/2009/04/26/doodly-day-is-almost-here/feed/ 40 Lou Reggie Bibbs http://reggiebibbs.wordpress.com/2009/04/19/houston-roller-derby-rocked-last-night/ http://reggiebibbs.wordpress.com/2009/04/19/houston-roller-derby-rocked-last-night/#comments Sun, 19 Apr 2009 17:27:31 +0000 Reggie Bibbs http://reggiebibbs.wordpress.com/?p=2465 ]]> Mistilla and Carmen Geddit were awesome last night! They were the last two jams of the night with the Psych Ward Sirens down by 10 or so points. What they did in the last two minutes of the match reminded me what Eli Manning did in the last two minutes of the Super Bowl a couple of years ago. They brought their team back with poise, concentration, talent and heart!!! What a finish!!!!

ALL PHOTOS

Unfortunately due to my not being rich, i.e. poor, I don’t have the financial resources to underwrite all the funding we need to meet my objectives. Thanks to Lou, I have been able to attend all of the functions you see in these photos courtesy of Lou.

I want to raise awareness of neurofibromatosis so that people affected as severely as myself can be accepted into society and lead a “normal” life. That’s why Lou and I and Matt and Geo and William and Shana go out together. When people see other people acting normal around something they don’t understand, they feel ok about it and figure there’s nothing wierd happening and they’re fine.

I want to create public service advertising that can run on YouTube, Google Video, TV stations throughout America and more.

I want to make neurofibromatosis a part of everybody’s vocabulary.

I want to show the world that NF people may look different than others on the outside but we’re all the same on the inside.

With the help of many dear friends who are much smarter than me and very creative, we have created an incredible website and blog and have linked to Flickr online photo sharing, YouTube videos, and MySpace. And that’s just the beginning.

We want to become the one-stop source for people who have NF, want to know more about NF or just want to belong to a community of like-minded NF people.

And we could use your help.

I hope you will join us in making www.reggiebibbs.com and all our internet resources the place to go for education, compassion, awareness, understanding, information, and fun!

Currently, we have some pressing needs that we need to move forward on but cannot without a little help. We need to have “Just Ask!” t-shirts printed to sell online and at community events. These are great because not only do they encourage people to ask about neurofibromatosis, they also serve as our sole means of financial support other than donations. No funds are allowed to be used for attending events or entertainment. Those costs will continue to be paid with personal funds.

Also, we have a dire need to update our computer equipment (i.e., scanner, software, printer, IMAC and internet connection), audio/visual equipment (i.e., digital camera and video camera, etc) and office supplies (i.e., stationary, business cards and mailing materials).

All donors will receive a dated letter or receipt on Just Ask Foundation letterhead showing the donor’s name, amount of donation and signature. A copy of our 501c3 certificate will be included as well.

Below is a link to PayPal if you would like to make a small donation. It’s pretty easy to do and would be very much appreciated. Or, if you prefer, you can also send a check via snail mail made out to:

Just Ask Foundation
c/o Reggie Bibbs
4918 Heatherbloom
Houston, TX 77096

Thank you for caring!

DONATE

Have a tremendous day!

Reggie

501c3-notification

We just received terrific news from the Internal Revenue Service.  The IRS has determined that the Just Ask Foundation is exempt from Federal income tax under section 501 (c) (3) of the Internal Revenue code!!!

This is extremely important to the future of the Just Ask!  Foundation because now contributions to the Just Ask! Foundation are deductible under section 170 of the code. We are also qualified to receive tax deductible bequests and gifts. We don’t have to rely on t-shirt sales to keep the website going or to fund our speaking engagements.

This is what we have been working on since last year.  Thank goodness: mission complete.  This wouldn’t have been possible without the tireless efforts of William Hughes, a friend of mine and Lou’s, who also happens to be on the board of the Just Ask! Foundation. William was the point person on dealing wtih the IRS and all the government agencies involved to get this special designation.

Also, none of this would have been possible without the generous support of Michelle Reed of STANANDLOU Advertising who donated the fees necessary to apply for the 501c3 status. Thank you so much, Michelle!

Thanks to William and Michelle, we will be able to raise money through donations, grants, foundations, fund-raising events, etc. and pay no taxes. Everything goes to fund the Just Ask!foundation! Great news for all involved!

I also met a lot of new friends as well.  Everyone I met tonight had the oppertunity to JUST ASK about NF, which is hard to do when at the derby.  This was a great way to spread awareness of NF. Great friends and a very super time. Enjoy the photos we have posted.  Leave comments on the blog and photos as well.

See you at the Roller Derby!

PHOTOS

Come early, stay late!

All the Derby Girls will be there!

Bomb-A-Betty!

Dunk a Dementia!

1. Why did you go to Hollywood?

Did somebody invite you? The Annenberg Space For Photography invited me out to a private party the evening before the opening.

What did they want to do? It was actually The Inaugural Exhibit. 8 LA Photographers John Baldessari, Carolyn Cole, Greg Gorman. Lauren Greenfield, Douglas Kirkland, Catherine Opie, Tim Street-Porter, Julius Schulman, Lawrence Ho, Kirk McKoy, Genaro Molina. Greg wanted me there to meet some of the photographers.  PHOTOS

2. How did you get to Hollywood? Greg Gorman bought my tickets.

How was your flight? I had a wonderful flight, on Continental Airlines. My last three trips since November have been on Continental Airline and it was a good reason I wanted them. All of my experiences have been terrific.

3. What happened when you arrived in LA? Who picked you up? Where did you go? When I arrived in LA, There was a driver waiting for me. His name is Jerry. Very nice man, who I have met before. Walking through the airport was great. Nothing different for anyone else. I felt like I was at the airport in Houston. From the airport Greg called and told the driver stop and get Reggie something to eat. Later we will have dinner. We went to get food. Bar-b- que at JR’S. I had a bar -b-que pork sandwich. When I arrived at Greg’s home Greg and I talked most of the evening.

4. What did you do once you got to Greg’s house? Jerry took me to Greg’s house

5. What did you do that night? (private party?) Was it fun? Did you meet anyone? At the private party, walked around and met some of the photographers, took pictures with some famous people. I met one of the guys from Crosby Stills and Nash, Graham Nash.

6. What did you do the next day? The next day Scott Dickson came to get me to visit with him.

How was the book signing? It was great. The second night we didn’t have to attend.

Did you meet anyone? Were you comfortable? Oh for sure I felt comfortable. I love this kind of stuff. Although Greg Gorman was protective and watched out for me. I had no worries though. People were very nice.

What did they say? People were very nice. No one made a big deal out of it. Yes, some had questions and I was very happy to share my story.

7. What did you do after the signing? Did Scott have a good time? Scott had a great time. It was good to have someone there like Scott. Because I sometimes have a problem walking, Scott was nice by helping me.

8. What did you do at Scott’s house? Why do you like staying with Scott? Why do you think Scott likes hanging out with you? The reason Scott likes hanging out with me? Because I’m such a wonderful guy. When I went to Scott’s house we watched movies, played on the play station, went a few places to eat. We talked all night. Scott and his family are the nicest people you can ask for in a friend.

9. What else did you do while in Los Angeles? Did you do stuff with Scott? Did you go back to Greg’s? Yes I was back and forth to Greg’ and Scott. It is never enough time to do everything.

10. Why do you like going to LA? People are so accepting in CALIFORNIA.

11. Do you think it is helpful to raising awareness of NF? Oh yes I do. Very helpful. Everyone I met in California have never heard of NF.

12. If you could do anything you wanted in LA, what would it be as it pertains to NF awareness? I would like to do in California what I do here in Houston for awareness. I would also like to meet everyone of my friends from facebook and myspace to live in California.

13. Why do you think Greg likes you so much? Greg has a big heart. He is that kind of person, to except a person for who they are.

14. Why do you think Scott likes you so much? The same reason. Not because of me, but because of who Scott is. Scott and I really connect. Scott listens to what I have to say, I like to hear what he has to say.

15. Anything you’d like to say that wasn’t mentioned before? When ever I get invited someplace. Someone else learns about NF. When I post my trips is to let everyone know that may or may not have nf, that people are more excepting then ever before. If we don’t get out and let people see use, they will never know we are there. You will never experience some of the great things I have experience. I cheated myself. I didn’t give people a chance and I too missed out on meet some wonderful people. I’m talking about wonderful people that you run into everyday. I’m thank for every friend I have here in my everyday like. They don’t have to be famous. Just people in my life that give me so much to be grateful for.. That is how I make it. People that take the time to say hello and just being a friend.

In any event, if you were at the party on Wednesday, please leave a comment so we can live vicariously through Reggie’s amazing life!

Top photo: Me and photographer,

Middle: Me, Christopher Atkins (Blue Lagoon) and Scott Dickson

Lower: Me and Audrey Wells (Director: Under the Tuscan Sun).

panty raider, scarlett o'hurtya, jeckill & heidi, reggie bibbs, dementia 13, david dementia 13, dirty sanchez

Tonight was the first game for the Houston Roller Derby. season.

It was a great night , and tough bouts in every match.

I have season tickets and, plan to be at every game to support all of my favorite teams as they have supported me.  All of the teams really know how to show love to there fans.  I always feel welcome at the games, and never felt more welcome anywhere else.  Don’t take my word, Just check out the photos.

It was great seeing old friends again and making new ones.

Dementia, Mistilla, Carmen Geddit and Heidi will always hold a special place in my heart!

To all of the new friends tonight, I appreciate your kind words and I hope to talk to you again.

Maybe next time, we can talk about you!

Thank you. PHOTOS HERE!

Links to Houston Roller Derby Skaters and Personalities:

Dementia
Jekyll and Heidi
Mistilla
Carmen Geddit
Speedo Racer
Savage Rose
The Colonel
Audiomind
Goldie Bloxx
Star Doom
Miss Lead
Death By Chocolate
Major Mayhem
Tawdry Hepburn
Scar Wars
Brat Poison
Mary Choppins
Elle McFierce
WreckHell Welch
Chicken
The Prosecutor
Ms Treatment
Beth Threat
The Bald Heretic
Claudia Van Damag
Chewcifer
Creeping Beauty
Scarlett O’Hurtya
Rebel Ann
Ivana B. Sedated
Hot Rod Betty
Fro Rocious
Dirty Sanchez
Sinista Sister
Holla Pain Yo
Domin8trix
Private BeenJammin
Jule B Sorry

Luckily for them, I had a few minutes to spare and tried to make their day.

I was at a Houston Dynamo Kick-Off Luncheon yesterday where the players were introduced and the cheerleaders kind of hung out.

In any event, it  was fun but next time I’m going incognito.

As you may know I go to DC every year to ask Texas congressman to sign on to the below letter. Please help further these efforts by going onto http://www.congress.org/congressorg/officials/congress/?district=26&lvl=C&azip= 1) TYPE in your zip 2) get your congressman’s email (left side/ federal) 3) forward on the following letter (cut and paste).

It’s that simple – Again – this will help us get our 20 mill. for NF research. Each year we get closer and closer to a treatment for NF. Please help continue this process by taking 5 min. out or your time to write.

ALSO – pass this email on to your friends and relatives. Every letter counts (all US states)! Thanks for your time and continued effort to provide hope for NF patients, family members and friends!

Susan Johnson

Texas Neurofibromatosis Foundation Board President

cell: 512.826.8770

http://www.texasnf.org

Support Neurofibromatosis Research

Representative (insert name) Washington, DC

Dear Representative (insert name):

As someone affected by Neurofibromatosis (NF), I am writing to ask for your support of Neurofibromatosis research through both the Department of Defense (DoD) and the National Institutes of Health (NIH). I specifically ask for your support by signing onto a letter seeking $20 million for FY10 from DoD to continue the Army’s highly successful Neurofibromatosis Research Program, and by signing onto a letter to the Appropriations subcommittee on Labor, Health and Human Services, seeking the inclusion of Report language on NF research. Thanks to the subcommittee’s past support, significant advances in NF research have been made over the past years and researchers are now on the threshold of a treatment and a cure for this terrible disease.

NF involves the uncontrolled growth of tumors along the nervous system, which can result in terrible disfigurement, deformity, deafness, blindness, brain tumors, cancer and death. NF is the most common neurological disorder caused by a single gene and it affects approximately 100,000 Americans. However, because of NF’s close connection to many common diseases and disorders, such as cancer, learning disabilities, heart disease, memory loss, and brain tumors, research on NF stands to benefit 175 million Americans in this generation alone.

The modest investment in NF research has already resulted in major breakthroughs toward a treatment and a cure for this terrible disease. However, I believe that we must continue to invest in research if we are to continue to advance toward treatments and cures for the numerous diseases associated with NF.

I thank you for your consideration of this request and I look forward to working with you as we advance toward treatments and cures for NF and the numerous diseases with which NF is associated. In the house please contact the office of Representative Gutierrez, Virginia Zigras at Virginia.Zigras@mail.house.gov or Victoria Sanville of Representative Peter Roskam’s office at Victoria.Sanville@mail.house.gov. The deadline to sign these letters is April 1st.

Sincerely, (insert name and full mailing address)

In Phoenix , Arizona , a 26-year-old mother stared down at her 6 year old son, who was dying of terminal leukemia.

Although her heart was filled with sadness, she also had a strong feeling of determination. Like any parent, she wanted her son to grow up & fulfill all his dreams. Now that was no longer possible..

The leukemia would see to that. But she still wanted her son’s dream to come true. She took her son’ s hand and asked, ‘Billy, did you ever think about what you wanted to be once you grew up? Did you ever dream and wish what you would do with your life?

“Mommy, I always wanted to be a fireman when I grew up.’

Mom smiled back and said, ‘Let’s see if we can
make your wish come true.’

Later that day she went to her local fire Department in Phoenix , Arizona , where she met Fireman Bob, who had! a heart as big as Phoenix?

She explained her son’s final wish and asked if it might be possible to give her 6 year-old son a ride around the block on a fire engine

Fireman Bob said, ‘Look, we can do better than that. If you’ll have your son ready at seven o’clock Wednesday morning, we’ll make him an honorary Fireman for the whole day. He can come down to the fire station, eat with us, go out on all the fire calls, the whole nine yards!?

And if you’ll give us his sizes, we’ll get a real fire uniform for him, with a real fire hat – not a toy — one-with the emblem of the Phoenix Fire Department on it, a yellow slicker like we wear and rubber boots. They’re all manufactured right here in Phoenix , so we can get them fast.

Three days later Fireman Bob picked up Billy, dressed him in his uniform and escorted him from his hospital bed to the waiting hook and ladder truck. Billy got to sit on the back of the truck and help steer it back to the fire station.

He was in heaven.

There were three fire calls in Phoenix that day and Billy got to go out on all three calls. He rode in the different fire engines, the Paramedic’s’ van, and even the fire chief’s car. He was also videotaped for the local news program.

Having his dream come true, with all the love and attention that was lavished upon him, so deeply touched Billy, that he lived three months longer than any doctor thought possible.

One night all of his vital signs began to drop dramatically and the head nurse, who believed in the hospice concept – that no one should die alone, began to call the family members to the hospital.

Then she remembered the day Billy had spent as a Fireman, so she called the Fire Chief and asked if it would be possible to send a fireman in uniform to the hospital to be with Billy as he made his transition. The chief replied, ‘We can do better than that. We’ll be there in five minutes.. Will you please do me a favor? When you hear the sirens screaming and see the lights flashing, will you announce over the PA system that there is not a fire?’

‘It’s the department coming to see one of its finest members one more time. And will you open the window to his room?’

About five minutes later a hook and ladder truck arrived at the hospital and extended its ladder up to Billy’s third floor open window——–16 fire-fighters climbed up the ladder into Billy’s room. With his mother’s permission, they hugged him and held him and told him how much they LOVED him. With his dying breath, Billy looked up at the fire chief and said,

‘Chief, am I really a fireman now?’

‘Billy, you are, and The Head Chief, Jesus, is holding your hand,’ the chief said.
With those words, Billy smiled and said, ‘I know, He’s been holding my hand all day, and The angels have been singing..’

He closed his eyes one last time.

I had a terrific meeting with Congresswoman Sheila Jackson Lee this morning!

Joining me at the Mickey Leeland Federal Building in downtown Houston this morning were Drs.Bart Moore and John Slopis from M.D. Andersen Cancer Center; Sandra Parker and her daughter, Emily,  Lou and myself. Sandra is a consumer reviewer for the research integration panel for the Department of Defense. She helps decide which NF research projects get funded based on consumer need and importance.

Congresswomen Jackson took time to meet with us even though she was hard-pressed for time having to fly back to Washington immediately after our meeting. I have to say she was great! She remembered me from a NF function years ago and was genuinely interested in everything we had to say. She seemed quite interested in our story (Emily’s and mine) and after getting all the information she needed,  told us that she would sign the petition to fund research for neurofibromatosis.

Congresswoman Lee also recommended other possible sources of funding that we should be aware of through the government. She will be signing on to keep funding research that will help neurofibromatosis, as well as other types of disorders that could lead to cancer. Everyone should be happy about that has happen today. All of us can benefit from this funding and from the wise support and leadership of Sheila Jackson Lee!         – Reggie

Posted in neurofibromatosis, Research ]]> http://reggiebibbs.wordpress.com/2009/03/09/a-meeting-with-congresson-women-sheila-jackson/feed/ 16 Reggie Bibbs sjl-reg 3342039624_7464363188_b http://reggiebibbs.wordpress.com/2009/03/08/reggie-lou-go-to-the-houston-roller-derby-3709/ http://reggiebibbs.wordpress.com/2009/03/08/reggie-lou-go-to-the-houston-roller-derby-3709/#comments Sun, 08 Mar 2009 06:40:35 +0000 Reggie Bibbs http://reggiebibbs.wordpress.com/?p=2241 ]]>

Mistilla the Killa and Me

Me, Dementia & David Norton, the director of my TV PSA.

PHOTOS

But wait,  there were more winners Saturday night!

STANANDLOU and I won two gold ADDYs, one silver ADDY, and a Special Judges Award for Public Service Advertising for our new “Just Ask! ads! . That was a total surprise to me. I’m thankful that the work here on the Just Ask campaign is getting noticed. More people will learn about nf as we keep pushing forward. Thank you all for supporting the site with your visits.

My New Friends, Tony and Jenny!

At left are new friends I met last night, Tony and Jenny.

The other couple I have known for years, Carmen and James.

My new friends just came over and sat next to Lou and me. Never bringing up the subject of what happened to me.  Lots of times it is no longer a subject.  Lou and I brought up the fact that I have Neurofibromatosis. They were so understanding and kind.

I feel great that I no longer stay home in fear of what someone will say to me.  It I felt that way,  I would have missed out on meeting the great people I have met last night and in the last few years.  My life has finally begun. I didn’t give people a chance before. This is why I started Just Ask, to encourage others that have NF to live life to the fullest. I’m doing it and I encourage them as well.  We can support one another in everything we do.

Posted in neurofibromatosis, PJ's Tagged: carmen geddit, Just Ask!, neurofibromatosis, reggie bibbs ]]> http://reggiebibbs.wordpress.com/2009/02/20/last-night-at-pjs/feed/ 19 Lou 3294565959_b28433e5ac_o 3294556771_48e58ca338_o http://reggiebibbs.wordpress.com/2009/02/03/trip-to-washington-dc-for-nf/ http://reggiebibbs.wordpress.com/2009/02/03/trip-to-washington-dc-for-nf/#comments Tue, 03 Feb 2009 19:05:54 +0000 Reggie Bibbs http://reggiebibbs.wordpress.com/?p=2183 ]]> The Texas Neurofibromatosis Foundation is sending a few of us to Washington DC, to speak to our Senators about Neurofibromatosis, in hopes of getting more support and funding for NF research. We leave Houston This Sunday, Feb 8th, return Wednesday, the 11th. When Susan Johnson, president of the Texas NF Foundation asked me to go with them, I was more then happy to be a part of this great opportunity to meet the Senators and show them how important it is that we have their support in the fight against this disorder. I know this trip will make a difference. Wish us luck!

SEE PHOTOS HERE!!!!

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 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.

Between ages 7 and 19, he underwent several surgeries, but the tumors returned. Since adulthood, health insurance companies have refused to cover the series of surgeries he needs to correct the problems.

“They say it’s cosmetic,” Port said.

The cost is expected to top $60,000 and require a team of doctors.

Port grew up in Andover, in Ashtabula County, and at about age 6 realized he looked different from other children.

“Another kid called me ‘fat face’ because of a tumor on the left side of my face,” Port said.

The name-calling — “big face,” “monster” — continued at least twice per week throughout school.

Teachers and some other kids chastised the name-callers and defended Port, but it had an effect.

Port contemplated running away from home.

His family, close friends and his faith helped him through the children’s taunts and continue to provide support as he faces difficulties as an adult.

Sometimes people stare upon first meeting the township resident. Other times, they look away.

The most blatant encounter happened a few years ago when Port crossed paths with a couple and their young child in an area store.

The mother gasped upon seeing Port then covered her child’s eyes. Port didn’t hear what the father said but deduced from the man’s facial expression both to the man’s wife, and then to Port, that he felt bad and criticized the woman.

“I’d rather they ask me [about the condition] instead of just staring,” he said.

Port works at an area call center and says his employer and fellow workers are supportive of him, but obtaining and keeping a job hasn’t always been easy.

Several years ago, Port’s job working in the public sector in Ashtabula was eliminated. He learned from his immediate supervisor that that man’s boss said Port shouldn’t be working in the public.

Other times, he’s been called in for interviews, but when he got to the office, was told the position was filled.

Port, who attends Holy Trinity Romanian Orthodox Church, Youngstown, has several interests outside work. He enjoys writing poetry, loves animals — he has fish and a cat — and likes to cook. Chicken cordon bleu is his specialty.

NF2 is hereditary, but no one else in Port’s family has it. He hopes for a family of his own and has learned from doctors that the chances of having a child who suffers from the disease are remote.

“I want to have a family,” he said. “I love kids.”

The condition isn’t painful although Port sometimes experiences discomfort, particularly in his left eye during periods of stress.

If he’s able to get help and have surgery, he wants to set up a foundation through his Web site.

“I want to help others who have NF2 or other conditions and can’t get the help they need — kind of like the movie, ‘Pay It Forward,’” he said.

denise_dick@vindy.com

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

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

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!

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

‘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, http://www.mmike.com.

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.

denise_dick@vindy.com

My favorite time of the year is Christmas. Here are some fun photos taken around the office I wanted to post.

I want to wish my friends and fellow bloggers a Merry Christmas and a Joyful New Year.

I will be here on the blog all week ready to blog with anyone who posts. Lets talk about what you have planned with family or friends.

Look forward to seeing you here.

The new ads will be sent as a public service announcement to a variety of publications throughout the country. Also, we have entered them in the American Advertising Federation award show. The ads will compete with ads from all over the country. This is a great thing to happen, whether we win or not, because our message will be seen from people all over the world. Which means, more people will know about NF. The ads are strong and to the point.

In 2009 I look forward to a bright New Year. We will have a new look. We started with the new t-shirt design. The website will be bright as well. I hope that you will join me in making 2009 brighter. We have the same cause. Awareness of Neurofibromatosis.

CLICK TO VIEW ENTIRE CAMPAIGN

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

Reggie