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.



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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.


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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!

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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.


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To all who are liking the photos and video from the Houston Art Car Parade:

Please know that it wasn’t easy getting to this stage of the Just Ask World Tour. It took a lot of time, sweat and money to make this happen.

Reggie and I were happy to take care of the time and sweat and a lot of the money involved with raising awareness of neurofibromatosis.

But now, unfortunately we are falling short on the money part that will take us through the tour.

Screen Shot 2015-04-13 at 8.45.11 PMI am truly excited as we have proven that the Just Ask Bus will work as a great awareness vehicle, pardon the pun, through the views donations and Shares of news of our travels.

The $15,000 we have raised so far has helped to get the Just Ask bus in condition to travel the country. We have a motor we kind of trust, the exterior wrap is finished and looks great thanks to some special help from Matt Cline and Bayou Graphics, and a very functional but yet cool looking interior from the Upholstery Shop.

Now, quite honestly, we need to build up the GoFundMe account so that we can actually travel with the bus.

This upcoming trip to attend the CTF Forum in Scottsdale, Arizona has more than tapped us out on our expense account. Fo us to continue and post a schedule, we will need to raise some money, not a lot, but enough to get us to a few more locations.

We really want to be able to make it to Canada and see all of our friends in Vancouver, Calgary, Manitoba and, yes, Red Deer.

Any help you can provide, no matter how small will go a long way for Just Ask to fulfill it’s mission — to make life easier to all with neurofibromatosis by raising awareness, understanding and compassion for those challenged by it.

I can’t think of a better ambassador for NF patients than Reggie Bibbs.

He is doing extraordinary things way beyond even his comfort level to make it easier for the next NF patient to live life a little easier.

If you are unable to donate, and we totally understand, at least share this page with your friends in the event they would like to help.

I think we owe Reggie our unending love and affection but also the funds to help him do what he was born to do.

Please click below. Thanks you!

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ALL HAIL JOANIE KING!!!

If it wan’t for Joanie King, the Just Ask Foundation would not have had the strength, stamina, know how or ambition to turn a run down, 1991 GMC school bus into a cool, smooth running, good looking, art car that has been seen by over 300,000 people on a Saturday afternoon in Houston.

If it wasn’t for Joanie’s enthusiasm, kindness, generosity and can-do spirit, I’m afraid of where we would be with the Just Ask Tour. She gave us strength and hope when we had none and her contagious enthusiasm kept us going when we were ready to give up.

It seemed only fitting then on Saturday that Joanie King was leading the way as the Just Ask World Tour Bus made its inaugural voyage in the year’s Houston Art Car Parade.

I just want to say this about Joanie…when other people just promise, Joanie is the person that does. I would rather have one Joanie than a thousand of the others!

She will always have our back and we will always have hers.

We love you Joanie King.

PHOTOS FROM PRE-PARADE SCHMOOZEFEST, 4-11-15!!!!

 PHOTOS FROM ART CAR BALL, 4-10-11

 

 

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Courtney Willoughby, NF Hero and blogger, “Courtney’s Column”

Please meet a very special friend of Reggie, myself and Just Ask, Ms. Courtney Willoughby of Red Deer, Alberta.

She writes a weekly blog that we think you would enjoy! It’s called “Courtney’s Column” and it’s very inspiring. But then, so is Courtney.

Several years ago, Courtney singlehandedly raised over $25,000 for NF research at a medical center near her home.

On October 5, 2013, Courtney became the first recipient ever of the “Reggie Bibbs NF Hero Award” in recognition “… of her exceptional courage, strength, and determination in her battle against neurofibromatosis and for her dedicated and tireless spirit in positively impacting the lives of others affected by neurofibromatosis.”

Below is her first blog published in “Courtney’s Column!”

Friday, September 12, 2014

“Welcome!

I want to be the first one to thank you for clicking that link to read my blog…. RIGHT ON! I thought I should probably introduce myself, so here we go!

My name is Courtney Willoughby, I am 20 years old and am living with Neurofibromatosis Type 1. What’s that you ask? Well check out the other page on this blog to learn more about it!

I was diagnosed with NF when I was 3 years old. There is no family history of it in my family, so you can only imagine how shocked and terrified my parents were when I was diagnosed. Growing up, I really never experienced many difficulties with NF, I met all of the major developmental milestones and was excelling in my studies at school. It wasn’t until I was 13 that I truly entered my journey into this whole NF business.

I had a plexiform neurofibroma removed off of my back the summer before I started Grade 8, which was an extremely painful procedure and recovery. At this point in time, I had never had an MRI of my brain, so my pediatrician decided it would be a good idea to have one done to use as a “baseline” reference.

Being only 13, I was absolutely terrified. I was terrified that something would show up on the scan. I was terrified I was going to have a nasty brain tumor that would be cancerous. I was terrified that I was going to need brain surgery.

After the day of my scan, I anxiously waited for the test results. I will never forget the day that my doctor sat me down and delivered the news.

I had a brain tumor.

It was inoperable. It truly felt like I had the wind knocked out of me. I couldn’t breathe. I kept asking myself “Why? Why me?”. I truly thought my life was over, my heart was broken. My doctor told me that we would need to keep a close eye on the tumor to make sure it wasn’t growing. I went home with my Mom that day as a completely different person.

After that diagnosis, I started having extremely horrible back pain, and I was soon diagnosed with scoliosis. After that, I started having headaches every day of the week (after seeing over 6 neurologists and 4 neurosurgeons, I still have headaches every single day!)

Over the next few years my diagnoses included: hypopituitarism (a rare hormonal condition), growth hormone deficiency, an undiagnosed hormonal condition, overactive bladder, mesodermal dysplasia (ribbon rib deformity),  hypertension, chronic sinus tachycardia, grade 1-2 heart murmur and multiple tumors in my leg, arm, auditory canal and pelvis.

The fact that I am sharing this with you right now is a miracle.

There was once a time in my life that NOBODY knew of my condition. It was my little secret. I didn’t want people to know because I didn’t want to be labeled a “freak”. I didn’t want to be ostracized or treated different than my peers. I hid everything, and it eventually took a serious toll on my health.

I developed depression and a severe eating disorder. I was a mere 84 pounds at my lowest weight. This isn’t something that is easy for me to admit, it’s only been recently that I am able to talk about it. You see, I never was overweight or anything like that. I was actually always the scrawny kid in  class.

The anorexia was all about control. I couldn’t control my NF. I couldn’t control the tumors growing in my body. I couldn’t control anything it seemed like… but I could control what I ate.

I stayed in this funk for a good 3 years, but everything changed when I had a once in a lifetime opportunity to meet Reggie Bibbs. If I told you the entire story you would probably be here for another solid half hour to read the rest of my journey, but I am going to keep it short and sweet.

Reggie Bibbs saved my life.

I was in such a dark place, with very scary thoughts running through my head. Reggie changed all of that for me. He made me realize that my life was worth living, and that NF didn’t have to define who I was.

Yes, it was part of me, but it didn’t have to be all of me.

Reggie gave me the courage to stand up for who I was, and who I wanted to be. And that is the reason that I am sitting here right now writing this blog post. Reggie Bibbs, you are an angel. I will be forever grateful for you!

So what am I doing now you may ask? I am going into my third year of my Bachelor of Science in Nursing Degree! I am so close to being done I can almost taste it! Once I’m done, I want to be a pediatric nurse working on a medical surgical unit at the Stollery Children’s Hospital. I want to care for children who are going through some kind of illness just like I was cared for. I want to give back.

So thank you for reading this, if there is something that you would like to learn about, put it in the comments below. Thanks for reading =)

Courtney”

 

http://l.facebook.com/l/gAQELoS6XAQFmzkZVAgt6BJewlTO7cTDKSzNSds89vdCr6Q/courtneys-column.blogspot.ca/

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Reggie Bibbs and I are excited to kick-off the Just Ask World Tour at the CTF NF Forum in Scottsdale, April 17! Come join us we finally get to meet all the great CTF people in Arizona!

April 17-19, 2015: Scottsdale, AZ
The Children’s Tumor Foundation’s NF Forum is a national patient and family gathering hosted annually in different cities across the United States. The NF Forum allows those living with NF, and their families, to connect, support, and learn from each other while attending seminars on relevant topics pertaining to neurofibromatosis. The 2015 NF Forum features: NF clinical and research updates, sessions on the personal and social challenges of living with NF, interactive Q & A sessions with NF specialists, fun activities, meals, social time with friends and family, and much more!

The Children’s Tumor Foundation, mindful of the high cost of transportation and family expenses, has underwritten a significant portion of the registration in order to keep the registration costs as low as possible.

FEES
Adult (Age 21+) $99 (USD)
Youth (Ages 17-20) $75 (USD)
Child (Ages 0-16) $50 for first child ($20 for each sibling)
Sat. Dinner Guest for non-registered attendees $100 (USD)
On-Site Registration: April 17-18, 2015 $150 (USD)
If you have any questions, concerns or need further assistance please email Traceann Rose at trose@ctf.org.

http://www.ctf.org/NF-Forum/NF-Forum-2013

 

Come to the Houston Art Car Parade on Saturday, April 11, as Reggie W. Bibbs and I officially launch the Just Ask World Tour and Bus to over 300,000+ parade goers! It’s the largest Art Car Parade in the world and we are honored to be chosen as one of its participants!

Houston Art Car Paradeimage

Immediately after the parade, we will be driving to Scottsdale, Arizona to attend the Children’s Tumor Foundation Neurofibromatosis Forum April 17 – 19! We look forward to seeing all of our old friends from CTF as well making a bunch of new ones!!!

Also, along the way, we will be spreading love and awareness of neurofibromatosis on behalf of the Just Ask Foundation and everyone challenged by NF throughout the world.

 

Posted in NF.
Reggie sewing on his pants.
Reggie sewing on his pants.

…just to put on his pants!

I was chatting with Reggie this morning and asked him what he was doing. He said, “I’m sewing my pants.” Of course, I asked, “Why?” He said that the tumors in his leg have grown so much that he has to sew his pants on as his leg is too large to put his leg through.

Reggie sewing his pants on.
Reggie sewing his pants on.

Which is understandable for anyone who has seen Reggie’s leg But here’s the part you didn’t know…when Reggie buys pants, he needs to buy two pair so that he can cut the left left off from the second pair and sew it onto the first pair so that he has a left pant leg that is double in size.

Can you imagine having to do this every day just to put on your pants?  I sure can’t! If anyone has any solutions to this problem, we’d love to hear them. I’m afraid Reggie’s leg is going to continue to grow and grow until surgery, medicine or life catches up.

Whenever Reggie needs new pants, we head down to the neighborhood Fiesta Store because it’s close by and they sell the brand of pants that fit Reggie the best, Dickey’s work pants.

Never bought clothes in a grocery store before but, in this case, it works well for all.

Thanks to Reggie’s experience working for Goodwill, he learned a lot of skills including upholstery repair where he quickly learned how to work a needle and thread.

Never once have I heard Reggie complain about living with neurofibromatosis and all the challenges that it presents. Never. I’ll tell you right now to the entire world, Reggie is a much better person than I am, that is without a doubt!

Posted in NF.