The Just Ask Foundation is extremely grateful that this story enthralled both a culturally and geographically diverse audience and helped to continue our mission of spreading awareness of neurofibromatosis.
If you have seen any other newspapers, magazines, or websites with Reggie’s interview, we’d love to recognize them as well!
The Just Ask World Tour depends upon your support to help spread hope and increase awareness of NF, domestically and internationally. Currently, renovations on the interior of the bus are still underway, so any support is greatly appreciated. As always, Just Ask is accepting gracious donations via Paypal and GoFundMe. Just click the green button to the right.
Thank you for your continued interest and support of the Just Ask Foundation and stay subscribed for more exciting news and updates!
The Just Ask team had a great day at Second Baptist Church. We met a lot of people in Reggie W. Bibbs bible study group but were very impressed by how friendly everybody was. I felt like we were in the middle of a Reggie Bibbs Fan Club convention. We couldn’t take two steps without someone coming up and saying hi. But we were blown away when Dr. Young recognized Reggie from the pulpit and proceeded to tell the congregation that Reggie was his hero for everything he is doing to raise awareness of NF.
Both of Reggie’s Facebook Pages are maxed out. The Just ask Foundation crew is quickly putting together a high quality site for all of Reggie’s friends to visit, to respond to and be inspired by. We are trying to gravitate ALL of Reggie’s friends, admirers and sponsors to post comments and questions only about neurofibromatosis and NF related events.
Kevin Nealon, former SNL star and long-time supporter of the Just Ask Foundation, preformed last Saturday, September 20th at Houston’s Improv comedy club. Naturally, the Just Ask crew stopped by for some laughs and photo-ops.
Nealon took the time to reconnect with Reggie before the show and was presented with his very own Just Ask World Tour shirt, which he even wore during his act! This thoughtful gesture even caught the attention of one audience member, who Just Ask-ed about it during the show! Kevin then told them about Just Ask and Reggie.
Afterward, Nealon joined the Just Ask crew to check out the bus. He has been a tireless supporter of the Just Ask Foundation for several years. We can’t wait to catch up with him again when the World Tour hits LA!
If you are interested in purchasing a Just Ask World Tour shirt, they still are available here. Sizes range from Youth Medium to Men’s and Women’s XXXL.
Thanks to your wonderful generosity and support, the Just Ask World Tour is now able to venture farther and farther from home. However, we’re not done yet! We have taken care of the two most important needs of the bus, mechanical and visual. Now we need to concentrate of the interior and functionality.
This ’91 vehicle sports the original interior. The Just Ask Foundation is not seeking luxury, only functionality. We need seating to accommodate Reggie’s unique needs, such as support for his leg. We also need spacious, lockable storage for t-shirts and other fabulous accessories, a comfortable captain’s chair for the brave bus driver, AC current for laptops and phone charging, exterior locks and privacy curtains.
Any help or suggestions in fixing up the interior of Just Ask Mobile is greatly appreciated. As always, we are accepting donations via Go Fund Me and PayPal. An Austin, TX tour stop is currently in the works, so be on the lookout for the Just Ask Mobile. In the meantime, there will be Just Ask World Tour news and updates regularly posted on social media and our website. Thank you again for your continual support towards promoting awareness of NF.
“This is NF” was a 60 second TV public service announcement for the Texas Neurofibromatosis Foundation. Reggie remembers the shoot fondly. “I love this. I remember when we were filming. I felt like a star. The crew was really nice. David Norton Who Produced is, Amazing.” Something that hasn’t changed since the shoot is Reggie’s outstanding modesty. As he says in the video, “It’s great. But then of course it is; I’m in it.”
From BCNF Symposium 2013, Reggie speaks about his strategies for coping with the challenging effects of Neurofibromitosis. Also, The Reggie Bibbs NF Hero Award is presented to Courtney Willoughby who stepped up to spread NF awareness in her community after her diagnosis and triumphs in her battle with NF. Remember, The Just Ask! Foundation runs entirely on the generosity of others, so please consider making a donation to the Just Ask! World Tour to help Reggie continue speaking across the U.S. and Canada.
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.
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.”
Texas NF Symposium 2014 at MD Anderson Cancer Center in Houston
Just Ask founders Reggie Bibbs and Lou Congelio drove the Just Ask Mobile to MD Anderson Cancer Center last Saturday, August 16th, to attend the annual NF Symposium presented by the Texas NF Foundation of Dallas, Texas.
Cindy Hahn, Executive Director of the Texas NF Foundation, and Emily Deutscher, Development & Events Director at the Foundation, did a great job in putting together an incredible event that allowed everyone to reconnect with NF friends and families from years past while also making many new friends!
A “Who’s Who” of NF doctors, surgeons, researchers, and clinicians were on hand to update us on the latest news and treatments. Among the doctors and topics discussed were:
Overview of NF and Genetics – John M. Slopis, M.D., MD Anderson Cancer Center
Benign and MPNST’s Surgical Resection – Ian E. McCutcheon, M.D., MD Anderson Cancer Center
Neuropsychology, Education and NF – M. Kris Frost, M.Ed, and John M. Slopis, M.D., MD Anderson Cancer Center
Clinical Research and New Protocols - Laura J. Klesse, M.D., Dallas Children’s Medical Center
Scolosis/Psuedarthrosis – Charles E. Johnston, M.D., Texas Scottish Rite Hospital, Dallas
Brain Tumor – Wafik Zaky, M.D., MD Anderson Cancer Center
Thank you Cindy, Emily, Dr. Slopis, and the Texas NF Foundation for all you do for the NF community. I don’t want to think what it would be like without you! For more information on the Texas Neurofibromatosis Foundation, visit www.texasnf.org or follow them on Facebook.