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Joanie King – Hero to Reggie Bibbs, Just Ask and all people with neurofibromatosis!

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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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A Word from NF Blogger and Hero, Courtney Willoughby!

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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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Just Ask World Tour to Make Stop at CTF NF Forum in Scottsdale, AR!

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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 [email protected]

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

 

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Just Ask Launches World Tour at 2015 Houston Art Car Parade, April 11!

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.

 

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It takes Reggie 25 minutes a day…

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!