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Reggie Bibbs basks in a hug from his mom, Dorothy Bibbs. Both have neurofibromatosis but his symptoms are more severe.

By Claudia Feldman

September 3, 2014 | Reprinted from the Houston Chronicle

Reggie Bibbs, who suffers from neurofibromatosis, found the courage to face the public and become his own best advocate for the disorder.

For 42 years, Reggie Bibbs struggled to cope with cruel comments about his appearance.

Children and adults slammed doors in his face. A teacher in middle school told him to take off his mask. He was grown and passing through the drive-through lane of a fast-food restaurant when a worker at the window took one look, screamed and threw his food at him.

Bibbs, who shares a home with his mother in southeast Houston, lived the life of a semi-recluse until 2006. That was the year he lost his brother to neurofibromatosis, or NF.

“That’s it,” he told anyone who would listen. “I’m not going to hide anymore.”

Bibbs also has NF, a genetic disorder that has marked him with large tumors on the left side of his head and a left eye that has drifted south to his cheekbone. While it still takes courage to face the public, he is now his own best advocate and an unofficial spokesman for other people with NF.

When Bibbs is out and about, he carries business cards that bear his likeness and the words “Just Ask.” He has T-shirts with the same message and even a converted school bus parked in his mother’s driveway. That, too, bears his likeness and the “Just Ask” logo.

Bibbs says he and his friends have taken the bus to the Texas Medical Center and look forward to road trips around the state and around the country. This weekend the rolling billboard is heading to an NF session at Camp For All in Burton. The idea is to raise awareness, push for early detection and save lives.

As Bibbs’ business card says, NF tumors can cause pain, disfigurement, blindness and death.

Early diagnosis

When Bibbs was born 50 years ago, he had such small tumors on his mouth, over his left eye and on the heel of his left foot that his mother, Dorothy Bibbs, didn’t worry at first. He cried in pain, however, every time she tried to put his shoes on. At 8 months, the infant and his concerned mother found their way to Houston’s Shriners Hospital for Children. After tests she learned that not only did her youngest have NF but so did she and three more of her six children.

Only Reggie had tumors on his face that grew bigger and stranger with each passing year. In his low, patient voice he says he had some teachers whom he loved and some good times in Scouting.

But overall, Bibbs says, “The kids were scared of me. They’d laugh, point and not want to sit next to me. And that was my school experience.”

Bibbs hop-scotched from regular classes at his neighborhood school, Grissom Elementary, to special education classes at West University Elementary to vocational classes at Pershing Middle School. During those adolescent years, he remembers it was easier to skip lunch than face verbal abuse in the cafeteria. Neither would he wait for the morning school bus outside. Instead, he’d hide in the house until the bus arrived, then make a mad dash and hope no one was looking.

His siblings tried to protect him from bullies, Bibbs says. But, even with a large family, there were more bullies than brothers and sisters.

Instead of high school, Bibbs attended a Goodwill Industries workshop, where he learned to upholster furniture. But he had to quit while doctors tried a number of surgeries to reduce the facial tumors and relieve the pressure on his left leg, which had swollen to twice normal size. Later, Bibbs worked in Goodwill’s shipping department, where he kept track of office materials and janitorial supplies. But that job was short-lived, too, because of recurring problems with his leg.

For a few years in the early ’90s, Bibbs worked as an employee and volunteer at the Houston chapter of the Texas NF Foundation. During fundraising campaigns, he met philanthropist Carolyn Farb, Dallas Cowboys quarterback Roger Staubach, then-Gov. George W. Bush and Hollywood photographer Greg Gorman. When the foundation’s focus shifted from outreach and education to research, however, the office closed, and Bibbs lost his gig.

“It was sad,” remembers friend and advertising executive Lou Congelio, who created some memorable ad campaigns with Bibbs. “Reggie started regressing. He really didn’t have anything to do.”

Hero in the NF world

Bibbs forgot his own problems when his brother came to him in the summer of 2005 and showed him the malignant tumor on his leg. Bibbs took him to see NF expert Dr. John Slopis, who had been treating the family for years. Slopis, at the University of Texas M.D. Anderson Cancer Center, says only 10 percent of NF tumors become cancerous, but all have to be monitored. Any one of them can take a dangerous turn.

After his brother’s death, Bibbs realized he did have a purpose in life, and that was to educate the public about NF. If, along the way, he could drop a few hints about the importance of self-acceptance and the golden rule, so much the better.

Congelio had the idea for the T-shirts, the business cards and the tour bus. He also took Bibbs to his first Astros game and showed him that the props and a new attitude could really help. Men Bibbs had never met were shaking his hand. Women he’d never met were kissing him on the cheek.

“Everyone’s just been so nice,” Bibbs says. “What we do is awareness, awareness, awareness.”

Tumors are the hallmark of the disorder which affects 1 in 3,000 Americans. All ethnic groups and both sexes are affected equally by NF, and there is no cure.

Slopis, the NF doctor, and Farb, the philanthropist, describe Bibbs as a hero in the NF world.

Farb has helped raise money for the cause for years, and she helped establish the adult NF clinic at Anderson.

“It’s a very painful disease,” she says, “and it’s like trying to put out a fire. Your operate on one tumor, and it comes back with a vengeance.”

Bibbs monitors the steady progress in NF research and treatment, but he no longer believes just one more operation, just one more procedure, will help him.

“Every surgery is painful, and I am done,” Bibbs says. “I’m OK with who I am and how I look.”


Reg&DorothyInside cover

If you would like to help Reggie on his mission to raise awareness of neurofibromatosis throughout the world, please visit http://www.gofundme.com/justaskworldtour. Thank you!

 

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Disfigured man wins Jefferson Award

POSTED: Thursday, January 13, 2011

UPDATED: 5:41 pm CST January 13, 2011

HOUSTON — A man who inspires others despite a lifetime of suffering from a condition without a cure is this month’s Jefferson Award winner.

  • WATCH IT: Man With Disfiguring Disease Inspires Others
  • FIND IT: www.reggiebibbs.com
  • Reggie Bibbs was born with a genetic disorder of the nervous system called neurofibromatosis, or NF.It causes tumors to form in the body. For Reggie, it disfigured his face.Reggie’s brother Ronnie also had it. The tumors took Ronnie’s life in 2006.But from tragedy, a purpose was born.”I want more people to understand about NF.  I want people to understand me, and I want to bring awareness,” Reggie said.The way to bring awareness on a large scale is on the Internet, so Reggie created a website, a Facebook page and a blog.Now, people with NF can virtually handhold each other about their trials and triumphs.

    Reggie did not realize how far-reaching his message would be.”Canada, Australia, London,” he said.The message to those with NF is the same — get out. Get out of the house and give people a chance to get to know them.”I’m just like them.  I still have those fears and worries they have, and I let them know that even with those fears, they still have to do it,” he said.He said he knew there would be questions, so Reggie came up with T-shirts that say “Just Ask” and made some cards explaining the disorder.And he started taking pictures with people, even famous ones.”Aaron Neville and the Neville brothers when they were in town,” Reggie said.Words of encouragement flooded in. Continue reading

    Dr. Ian E. McCutcheon, Texas NF Symposium, M.D. Anderson Cancer Center, 8/7/2010

    Dr. McCutcheon spoke at the NF Symposium M.D. Anderson Cancer Center, 8/7/10, on the topic “Surgical Strategies for Neurofibromatosis.” Event sponsored by the Texas NF Foundation.

    WATCH VIDEO

    Ian E. McCutcheon, M.D.

    Present Title & Affiliation

    Primary Appointment

    Professor (with Tenure), Department of Neurosurgery, Division of Surgery, The University of Texas MD Anderson Cancer Center, Houston, TX

    Dual/Joint/Adjunct Appointment

    Professor, Department of Neurosurgery, Division of Surgery, Baylor College of Medicine, Houston, TX Continue reading

    the-fivesome
    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

    Reggie3111711727_9701e563b1_o23111711737_09723f99eb_o3111711765_fefc0debbe_o

    3090342427_26cb9dd5b3_b3090342561_eb020396fa_bThis weekend I got the shock and surprise of my life! I was going through my emails looking for a phone number when I came across an unopened email dated November 14! It was from my new friend Kevin Nealon, from Saturday Night Live, who I had just met the night before.

    I have no idea how I missed this very important email but I guess it was because I was traveling and wasn’t able to check email till I got back home. Anyway, here is the very nice email that Kevin wrote plus the photos he sent.

    Hey Reggie,
    So great meeting you last night, and your friends! I’m so
    flattered that you guys came to my show. Oh, loved your website, too!!
    Susan and I loved checking out each category. Great videos and pics,
    great coverage on the news stations as well. We’re so impressed with
    your courage and your raising awareness of NF. What a difference you
    are making! Please keep us updated on the foundation.

    Attached are a few pictures of me wearing your shirt. Btw, it
    fits me like a glove. I have a new cause now. 🙂

    Best wishes,
    Kevin and Susan

    Most of you have seen the photos from my trip to Manhattan Beach California, when I went to visit my friend, Scott. Well, on the visit, Scott suggested we go see Kevin Nealon at the Comedy club. That is where it all happened. After the show Kevin came over to meet me. It was there when I shared with Kevin and his Wife Susan about NF. What a nice couple they both are. So kind and understanding to NF, and the JUST ASK campaign. I’m proud that Kevin is wearing one of my JUST ASK! T-shirts. You never know where you may see one next. Thank you Kevin and Susan for your support. Hope to see you soon.

    Speaking of the roller derby, mark your calendar for August 10 as the Houston Roller Derby honors a certain person on this blog who will remain nameless.

    Houston Roller Derby

    Sunday, August 10

    Doors open at 4pm

    Bout starts at 5pm

    Verizon Theater

    Downtown – Texas at Bagby (LOTS OF STREET PARKING AND THEATER PARKING)

    DON’T FORGET TO WEAR YOUR “JUST ASK!” T-SHIRT!!!

    Please make plans to attend and wear your Just Ask! t-shirt. Don’t have one, no problem! We hope to be selling them before the match!Advance tickets are just $10 online, $15 at the door!

    Come see all of your favorite skaters including Dementia, Mistilla the Killa, Jeckyll & Heidi, Carmen Geddit, Death by Chocolate and more!!!

    SPECIAL THANKS TO ALL THE SKATERS, FANS, REFS AND FRIENDS WHO HAVE MADE GOING TO THE ROLLER DERBY EVERY BOUT A WONDERFUL EXPERIENCE! YOU HAVE NO IDEA HOW MUCH THAT IS APPRECIATED!!!

    Texas Neurofibromatosis Foundation Newsletter

    Charles, June and John Lowe raise over one million dollars for the foundation!

    Charles, June and John Lowe raise over one million dollars for the foundation! The Lowes have been with the foundation since the very beginning and have been raising funds through a weekly bingo session since 1988. Their devotion and contributions are more than appreciated, they are our inspiration and the backbone of this foundation.

    Senator Harkin speaks out for NF! For the past several years, Senator John Harkin has sponsored an “NF Dear Colleague letter.” This letter was drafted to ask that all US Senators support NF research through the Department of Defense Appropriations Committee. These effort are the very reason scientific advancements have been made towards a cure for NF! Please join us by personally thanking Senator Harkin for his continued support.

    CURRENT EVENTS

    JULY Summer Family Picnics: Bring the family and meet others in the Houston, Dallas and San Antonio areas!.

    June 26, 2008: Support Group Meeting, Dallas, TX
    Sept. 5-7, 2008: NF Family Camp, Burton, TX
    Sept. 23, 2008: Friends FORE Friends Golf Tournament, Richardson, TX
    October 18, 2008: Spam OH! Rama, Irving, TX

    2008 Symposium: Dallas, TX. More details to come. Continue reading

    Watch the interview that has all of Reggie’s blog talking as FOX News 26 interviews Reggie Bibbs. Damali Keith revisits Reggie to see how he has adjusted to life now that he has taken his disorder, neurofibromatosis, yo the public through his “Just Ask!” campaign.

    There’s even an appearrance by Lou and some of his staff!

    HERE’S THE INTERVIEW!!!

    I hope this link works. if not, go to

    http://www.myfoxhouston.com and search for Reggie Bibbs.

    Texas NF Foundation to stage city-wide fundraiser at Houston’s best restaurants2008 Houston HighlightsLast night, Lou and I attended a special committee meeting to help plan and execute a fund-raiser to help those with NF in the Houston area. The fund-raiser will be held on Tuesday, April 22, 2008, at the Hotel Derek, in the Galleria area of Houston.

    I am proud to be Honorary Chairman of this important event and I hope all of my friends can join me in this very worthy cause! Below is a letter from our Houston Highlights Chairman, Ishma Blackwell, detailing the event. It’s going to be a lot of fun!

    DOWNLOAD INVITE  2438_001.pdf

    Continue reading

    cup8x10.jpgI’m proud to present to you the Reggie Bibbs online Just Ask! Store. We are now open. There are a wide range of new products available.

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    We can increase awareness of Neurofibromatosis on a wider range, at the same time raise money for neurofibromatosis.

    All proceeds will go toward research and awareness. I know you will find a product that will meet your fashion needs. My original shirts can be ordered from my site. The new link will take you to the store.

    Happy Holidays and Happy Shopping!