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

 

Posted in NF.

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

Posted in NF.

THE JUST ASK FOUNDATION IS PROUD TO PRESENT THE REGGIE BIBBS NF HERO AWARD

to

John M. Slopis, M.D.

In recognition of his selfless dedication, unwavering support and unconditional love he provides those with neurofibromatosis. With his caring and guiding hand, Dr. Slopis has given hope, comfort and treatment to thousands of patients challenged by NF through his inexhaustible knowledge of and experience with this little know disorder.

God bless you, Dr. Slopis. You are not only our Hero, you are our Guardian Angel!

This 12th Day of September 2015

Reggie W. Bibbs – Founder, Just Ask Foundation

Vincent Riccardi – Medical Advisor, Just Ask Foundation

Lou Congelio – Executive Director, Just Ask Foundation

Posted in NF.


image

Was out of town for a week so took Reggie Bibbs and his nephew, Kory, who also has NF, to our favorite restaurant in Houston, Saltgrass Steakhouse in Meyerland Plaza. Brooke, our wonderful waitress was charming, super attentive and perfect in every way. Thank you, Saltgrass, for always going above and beyond for all of your diners! We’ll be back!!!

For a measly little donation, you can make all this go away! Well, except for me, I'm staying!
For a measly little donation, you can make all this go away! Well, except for me, I’m staying!

Only $315 to go! I honestly don’t want to cut my beard but if it raises money and attention for Neurofibromatosis awareness, I’m all for it….for the right price, that is! $500 is all it will take to see my face bare-ass naked! Five people have already ponied up. How about the rest of you? For an additional $1,000, I will shave my head. That is definitely something I do not want to do! Go to
http://www.gofundme.com/justaskworldtour to make a difference!

Thank you, Kathryn Tyler and Poison Girl for hosting our first ever Just Ask Fundraiser! Thank you to everyone who showed up and those who chose to donate via our gofundme account instead. A Grand Total of $1,500 was raised which will cover most of the expenses of our next world tour stop as soon as Reggie is up for the travel.

The Art Car Gang!
The Art Car Gang!
The ad gang arrived!
The ad gang arrived!

 

Thank you, again, everyone for a great afternoon at Poison Girl and a great opportunity to raise awareness of Neurofibromatosis to a new audience!

Robert Anthony Weston, Laura Wood and Lou Congelio at Poison Girl Lounge in Houston.
Robert Anthony Weston, Laura Wood and Lou Congelio at Poison Girl Lounge in Houston.
Our good friend Elizabeth Bertrand!
Our good friend Elizabeth Bertrand!


11133688_10153295299576457_1528715549548400202_n
Just Ask Fundraiser at Poison Girl

Sunday, July 12, 2015

4 to 10 pm

(713) 527-9929

1641 Westheimer Rd, Houston, TX 77006

Includes:

All Day Raffles!    Bake Sale by Reggie Bibbs     Art Cars     Just Ask t-shirts   Houston Roller Derby skaters         Astros ticket raffles!     Maybe a food truck!

All proceeds benefit the Just Ask Foundations and the Just Ask World Tour!

Logo

Hands down, dive bars are our favorite joints to hang out in and Poison Girl in Houston is no slouch when it comes to providing good, clean dive bar fun. There’s a few pinball machines, cheap, heavy drinks, a hip cast of urban bohemians bellied up to the bar and a killer jukebox—this one being heavily, okay totally, steeped in all music Texas, from country to punk, rockabilly, indie and some hip-hop. Poison Girl brings to the Houston bar scene exactly what it seemed to be so lacking in, a dive bar that knows it’s a dive bar and doesn’t want to be anything more than that.           A portion of all Poison Girl proceeds of July 12, 2015 will benefit the Just Ask Foundation, a 501 (c)(3) dedicated to raising awareness of neurofibromatosis.just ask 18968977458_0d34816213_b

Posted in NF.

Over half of patients treated with selumetinib in phase I trial see reduction in plexiform neurofibromas.

New York, NY (PRWEB) June 08, 2015

As hundreds of the world’s leading NF experts convene in Monterey, California for the Children’s Tumor Foundation NF Conference, the largest gathering dedicated to neurofibromatosis (NF), it was announced today that for the first time in the history of the treatment of plexiform neurofibromas (PNs), over 50% of patients saw decreased volume in these inoperable tumors. In a presentation titled “The Promise of MEK: Therapeutics for NF1”, Brigitte C. Widemann, MD, of the National Cancer Institute (NCI), reported that response data in a phase I trial for children an Continue reading

Caught it in the nick of time…mechanic told me I was running on air!!! Damn! If it’s not one thing, it’s another. Pretty soon we’ll probably have to start thinking about flushing the oil and rotating the battery.image

image

 

ABOUT NEUROFIBROMATOSIS (NF):*

• Neurofibromatosis, or NF, is a common, yet under- recognized genetic disorder that can cause tumors to grow on nerves throughout the body.

• NF is more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined.

• NF occurs in one in every 3,000 people and affects millions worldwide.

• NF can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain.

• NF can arise in any family regardless of race or ethnic origin. Roughly half of all cases arise in families with no history of the disorder.

• NF has three distinct forms, NF1, NF2, and schwannomatosis.

• NF research is shedding new light on several forms of cancer, brain tumors, bone abnormalities and learning disabilities, ultimately benefiting the broader community in addition to those with NF.

• Progress toward ending NF is being made every day. Because of Children’s Tumor Foundation funding, there are over 40 on-going NF-specific clinical trials in existence, and 44 NF Clinics nationwide.

* Above information was provided by the Children’s Tumor Foundation (CTF.org)