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The Just Ask Bus Needs a Little Push. Financially.


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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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Video from Just Ask Mobile during Houston Art Car Parade!

Screen Shot 2015-04-13 at 8.45.11 PMCheck out our video from INSIDE the Just Ask Bus! Lot’s of fun!

2015 Houston Art Car Parade Video

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New Design for Back of Bus!

We decided to simplify the graphics on the back of the bus to make it easier for fellow road hogs to connect with us on the road, particularly our Twitter brethren. I like it a lot. Much cleaner and easier to read. We also added a photo and quote from Reggie and hashtags for our social media geeks.

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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”

 

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Gotta Love Deborah and OfficeMax

I went to OfficeMax for office supplies today.  As Lou and I shopped, Deborah asked if we needed help with anything. She helped with finding the ink for my printer.

When it was time to check out, Deborah, was there again with a big smile. I had a chance to mention Just Ask, but didn’t have any cards with me.  Deborah, was nice enough to allow us to take a photo of her.

Thank you Deborah, for your help, and for being so kind! Office Max should be very proud of you!