Just Ask Goes Camping!


3623a0cb-2fe5-4521-b158-43cce503fa56The Just Ask World Tour trekked to the Texas NF Family Camp

Last weekend, Reggie and the Just Ask crew drove to Burton, TX where they met scores of inspirational NF patients and families at the Texas NF Family Camp at “Camp for All”. A sincere thanks goes out to Emily Deutscher (lower left) and Cindy Hahn (lower right) from the Texas NF Foundation, who were instrumental in making this wonderful event possible.

Posted in NF.
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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&Dorothy Inside 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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The Bus Stops Here!

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.

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Reggie Bibbs and Sarah Hines Austin
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Reggie Bibbs and Hannah
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Cindy Hahn and Emily Deutscher of Texas NDF Foundation

Reggie Bibbs and Dr. John Slopis of MD Anderson Cancer Center
Reggie Bibbs and Dr. John Slopis

Posted in NF.

Screen Shot 2014-09-02 at 3.58.21 PMToday,  I was creamed by Reggie W. Bibbs after Courtney Willoughby nominated me for cremation. And to think I actually liked Courtney during one, very narrow window of time when i was obviously incapacitated with love by the beauty and charm of her mother, Tracey Willoughby.

But, being that as it may, i went through with the unspeakable miasma of horror only cheap Foodarama whipped cream could provide and did my duty!

However, what wasn’t in the plan was to be dumped on by freezing, ice cold water after the creaming of the face by my former friend, Reggie Bibbs.

Needless to say, somebody is going to die tomorrow and three guesses who it will be!!!

In any event, being the good father that I am, I nominate my daughterElena Congelio to join the fun that is NF Awareness.

Also, for those who would prefer to forego this unique, mind-numbing experience, you can just make a little donation to the Just Ask World Tour Fund and nobody needs to get hurt! Just sayin…

https://funds.gofundme.com/index.php?route=donate2%2Fdonate&url=JustAskWorldTour https://www.youtube.com/watch?v=KPyCDWqDMTw#t=31

busindrivewayThe Just Ask Mobile is in Reggie’s driveway! We would like to take this opportunity to thank those hundreds of friends and family who have given of their time, encouragement, love and, yes, money, to make Reggie’s dream a reality!

Please, stand up and take a bow!!!
And, while you’re standing up, we humbly ask if you could take out your wallet, once again, for we still have a long way to go, literally and figuratively!
We are now wrapped and road worthy. Now we just need to raise enough funds to keep us on the road to as long as possible to educate people and raise awareness of neurofibromatosis throughout the United States, Canada and, soon, the world!
To donate, please click here:
http://www.gofundme.com/JustAskWorldTour?utm_medium=wdgtBus Design: Kim White Bus Photography: Arthur Meyerson Scott Dickson Bus Wrap: Bayou Graphix Bus Donated by: Deer Lake Lodge Spa & Resort

Thank You!I want to say thank you to all of my friends for the support in making the dream of the Just Ask! Tour Bus a reality. Without your prayers, finical support, manual labor, and the kind words that so many of you offer everyday. I wouldn’t be where I stand today if it were not for your support, And for that Lou and I thank you.
My next point I want to make. If you have a dream or a desire to accomplish. Expect setbacks expect tears and very hard times. Ask Ask us. Didn’t mean for the play on words, but it’s true. Lou and I will tell you. These are things we experienced in this bus campaine. Somedays you may feel like it’s to hard. But if you never give up, you can make your dream happen. It may not happen as quickly as you want, but with a little pataince faith, and believing in yourself. You can make your dream a reality.

Reggie Bibbs

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Reggie Bibbs and Rod “Dirty Sanchez” Lozano

“May 17th was World Neurofibromatosis (NF) Awareness Day and the Psych Ward Sirens celebrated with long time Siren fan Reggie Bibbs.

 Reggie lives with NF and is the founder of the Just Ask! Foundation. Just Ask! is a non-profit organization dedicated to spreading awareness about NF through the people most affected by it.

You’ll often see Reggie at bouts with his friend Lou Congelio. Reggie and Lou were named Super Fans of Houston Roller Derby at the league’s awards banquet earlier this year.

For more information about NF and Just Ask!, you can go to www.justaskfoundation.org

– Rod Lozano,  Coach, Psych Ward Sirens

 

Ok, this is Lou talking now and I want to thank Rod “Dirty Sanchez” Lozano for putting together a night that Reggie and I will not soon forget!

As soon as we got through the doors, we were greeted by Rod with the wonderful poster card you see in the photograph signed by all the members of the Sirens.PsychWardSirens-Reg

But it didn’t stop there, Rod then set up an impromptu photo sessionwhere all of the Sirens came to get their photo taken with Reggie!

Then, on top of that, Rod bought two Just Ask tshirts and made a MAJOR contribution to the Just Ask Mobile Bus Fund!!!

Thank you, Rod, “Dirty” and all of the Sirens for an incredible evening of love, friendship, and the best Derby action on the Planet Earth!!!

Farah Zaghmouth
Farah Zaghmouth and Reggie Bibbs

Reggie and I stopped at Star Pizza in the Heights for a pre-game meal before attending the Houston Roller Derby at the Bayou Music Theatre last Saturday.

As soon as walked onto the patio at Star we were approached by Farah who made us feel like we were the only customers at the restaurant.

Thank you Farah for a wonderful visit, your beautiful smile and the best damn pizza on the planet! If you’ve never been to Star Pizza, you’re missing out on some of the best pizza in the city.

My personal favorite is the New York style, whole wheat Starburst or the Joe’s Special, mad with fresh sautéed spinach and lots of fresh garlic!!!!!!!

Reggie's first baseball gameThe neurofibromatoses are a group of three genetically distinct disorders that cause tumors to grow in the nervous system.  Tumors begin in the supporting cells that make up the nerve and the myelin sheath (the thin membrane that envelops and protects the nerves), rather than the cells that actually transmit information.  The type of tumor that develops depends on the type of supporting cells involved.