“It is an amazing feeling to know there are a lot of great people that are around us everyday. The acceptance I felt today is something that I wish every person with NF to receive the same feeling. No, it wasn’t easy, but it was worth it all.  If I stayed home. I never would have met the wonderful people I met today. Thank you for caring.”

Reggie

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I received this nice note from from my friend Zach Galifianakis. Thank you Zack.


 

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Our friend,  Simon Vukelj, of the Children’s Tumor Foundation, sent us a link to this weeks People Magazine, South Africa edition! Thanks, Simon! It’s nice to see Reggie’s work and Maurice’s coolness continue to get noticed worldwide!

Living With  Neurofibromatosis

  • Pearl Mphuthi, March 30, 2016

When most of us worry about pimples, zits or even wrinkles. Real people like Reggie Bibbs and Maurice Simpson embrace, accept and manage to live with Neurofibromatosis throughout their lives.

“None of the one’s on my face hurt. They’re just like extra growths, you know, fatty tissue. Above my left eye there’s a lot of itching on the inside, it tingles on the inside above my eye.” This is one of Reggie Bibbs response when he was asked about his struggles with a disease called Neurofibromatosis.

10442432_10152533824331518_7618939240264365475_nNeurofibromatosis (NF) is a genetic condition causing benign tumors to grow along certain types of nerves that affects the development of bones or skin. This brutal condition causes pain and even death and the tumors get bigger over time.

Reggie Bibbs a man from Houston, Texas. His struggle with NF began when he was a toddler, “I was eight months old when we found out about neurofibromatosis. They found a small tumor on my heel and a small tumor on my eye and one in my mouth”.

Growing up, like any other child, Reggie was victim of harassment. In an exclusive interview prepared by Wikinews reporter Michael Laurent, Reggie has pointed out how difficult growing up was and how he looked different from everyone else, “It was really difficult going to school because there were a lot of kids that used to make fun of me, and there were some that were nice,” he says.

NF has spread all over Reggies body including his leg and the left side of his face, “My leg from the knee down are tumors and a lot of fatty tissue and it swells. It’s difficult to walk.” Reggie’s leg is shaped like an S and he wears special socks to help him get around, “I have to wear a special sock to hold it together to keep it from expanding. It’s a compression sock and it’s helped with circulation. If I take the sock off it won’t look like an S. All the fatty tissue would just drop,” he adds.

After numerous failed surgeries, Reggie’s mission is to put himself out there to raise awareness about the causes of NF. There are a lot of patients who fall victim of this dreadful disease but are afraid to seek help because they prefer to hide behind closed doors and deal with this ordeal by themselves.

Maurice Simpson is an outgoing and confident man from Ogden, Utah.  He does not let his condition get in his way. He has had Neurofibromatosis since he was six-weeks-old and the disease has spread and disfigured his face.  The 36-year-old father of five has accepted his state and with the support of his family, he faces each challenge as an opportunity to help those in need.

It’s clear that Reggie Bibbs and Maurice Simpson share a lot in common. Both sufferers of NF and till today they manage to live with it and are on doing more research to help find a cure.

Together they agreed to feature in TLC’s ‘My Brand New Face’ which aired earlier this year. The documentary is aimed to inform and educate the world about Neurofibromatosis. The reality show showcased Reggie travelling to meet Maurice for the first time face-to-face and together they share a lot of common interests.

The pair was happy to have finally met and formed a brotherhood relationship. Maurice works as a Manager at a fast food chain and lives with his supportive wife of eleven years and children. He loves being in front of people. In an article written by Janae Francis, Maurice said, “I don’t want to hide or stay in the house. I want to be out and about making people happy…I’m in that point in my life with all the questions people ask. I just want to do more”. A local businessman showed his generosity when he anonymously sponsored Mr Simpson’s surgery, “My anonymous donor, I call him my guardian angel, I mean, he’s just a great guy. Whenever I think about it, I get kind of choked up because I don’t know why he would do something like that, you know”. The documentary covered a graphic scene where Maurice underwent surgery for thirteen hours and a five hour procedure to remove the tumor from his face. In another article by Carole Mikita, Maurice was pleased with the successful operation, “It looks a lot better, and it’s given me a new-found confidence”.

The ‘Just Ask’ Foundation was launched when Reggie wanted to spread the word about Neurofibromatosis. He knew that coming forward and taking a stand about NF will help people who fight this disease.

Living With Neurofibromatosis

 

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Mr. Bibbs
This past week I was at md Anderson for a follow up to some surgery I had. While waiting for my truck I had the good fortune to be standing next you while you waited for your ride. I always enjoy meeting and talking to new people everywhere I go. We started talking and enjoyed our conversation. The talk turned to Canada and traveling and the weather. I asked you where you had previously worked thinking that maybe your job had taken you to different places.
You were so elequent in your conversation and I was happy to get your name and shake your hand. You had such a pleasant demeanor and outlook not appearing to be over burdened with the daily issues that you every day. I had hoped it would take longer to get my truck back.
I was telling my wife about you and thought about you on our trip back home to north Arkansas. Years back I had read an old book “very special people”. It got me to read a lot about different different folks with health issues that would/could bring a person to withdraw from daily life and virtually disappear especially with the ignorance of so many folks they come into contact with. Then you have some who don’t allow that to happen and use their issues and disabilities to lift others.
I get so wrapped up in day to day issues and get depressed at times thinking how difficult it is. Our eyes are opened at times by amazing folks with amazing life circumstances.
I got home and on a whim looked up your name and lo and behold I find the “just ask” website . Amazing.
It is obvious that you are one of those folks who does use what issues or disability you have as a lifting tool to others. It’s an amazing ability given to few and used by a chosen few. No wonder it showed in that short time I had the pleasure of talking to you. My question of where did you work is irrevelent. My question should have been how many years have you been employed at your organization and more years to come.
We have to come back to Houston for medical issues. Thought after retiring from Shell oil after 38 years I could get away for good. The old saying “growing old isn’t for sissies” ain’t no lie. Houston has the best medical facilities.
My wife and daughter have a small medical Id business, ( http://www.idmii.com) and she’s on all these congenital heart groups due to issues she has (daughter) and lives in Houston so we have to go back often. Some amazing folks and stories in those groups too especially with the kids.
Our next trip back I’ll have to buy a couple of the t-shirts.
Keep up your amazing work and was a pleasure meeting you.
Charlie Holmes
cmholmes1952@gmail.com

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But it’s a secret for now…but not for long.

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Juanita and John
Juanita and John Harriman

Hello Lou. I have been following Reggie and you shortly after the feature film with Maurice Simpson I might have spelled his name wrong. “My New Face”. When Maurice had his surgery, then there was a section on Reggie. My husband John Harriman. Is 65 yrs old. He has NF. So does our son and his two daughters, his son does not have NF. Our daughter and her 4 children do not have NF. I just wanted to tell you, I think what you have done with Reggie, with the music, traveling and the bus, all of you have brought a lot of awareness to NF. I wanted to thank all of you. Years ago, my son and my husband had tumors removed by the doctor in Omaha Nebraska, sent to Dr. Francis Collins, in Ann Arbor Michigan, at the University of Michigan, this study for the gene that causes NF. The local news station came to our house, and did a short story on our family. It was called “The New Hope Family”. My husband and son, g9t no money for this. No awards, just the one time little section on the channel 3 News in Omaha, Nebraska. Just being able to be in this study was an honor for my son and husband, to be part of this study. Oh I forgot to mention, my husband John Harriman has two nieces in Dallas, they have NF also. The one niece has had many surgeries for NF. I do not know about her daughter. Once again, thank you for doing all you do for NF Lou.

Thank you, Juanita!

 

Posted in NF.

We had so much fun last year driving in the Houston Art Car Parade that we have decided to participate again this year! Come on out and join us as we bring awareness of Neurofibromatosis to over 300,000 + attendees!!! Mark the date: Saturday, April 9, 2016 in Downtown Houston.

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Kansas City, MO, Race director Layne Whitehouse said, “There’s been a huge impact that people running in their underwear are helping make.” With more than 300 runners and $40,000 raised, the event is growing. Whitehouse says there is a reason they run in their undies.

“If you can be uncomfortable for a day, you can experience what it’s uncomfortable to be like in life with the kids who have the neurofibromatosis.”

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