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ABOUT NEUROFIBROMATOSIS (NF):*

• Neurofibromatosis, or NF, is a common, yet under- recognized genetic disorder that can cause tumors to grow on nerves throughout the body.

• NF is more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined.

• NF occurs in one in every 3,000 people and affects millions worldwide.

• NF can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain.

• NF can arise in any family regardless of race or ethnic origin. Roughly half of all cases arise in families with no history of the disorder.

• NF has three distinct forms, NF1, NF2, and schwannomatosis.

• NF research is shedding new light on several forms of cancer, brain tumors, bone abnormalities and learning disabilities, ultimately benefiting the broader community in addition to those with NF.

• Progress toward ending NF is being made every day. Because of Children’s Tumor Foundation funding, there are over 40 on-going NF-specific clinical trials in existence, and 44 NF Clinics nationwide.

* Above information was provided by the Children’s Tumor Foundation (CTF.org)

imageIt wasn’t easy. It wasn’t pretty. But, it worked!

The Just Ask Tour traveled over 1,300 miles – from Houston, TX to Scottsdale, AZ – to attend the annual CTF NF Forum! Over mountains, through deserts, eating more fast food than we’ve ever eaten in our life, Reggie and I made it and lived to talk about it.

It’s been non-stop meetings and presentations packed with news on the latest clinical trials for Neurofibromatosis patients, the latest research and the latest facts about this disorder that affects 1 in 3,000 people!

I’ll write more after the conference is over but this is what the CTF website had to say:

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.

 

 

 

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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Reggie and I are so blessed to be surrounded by so many caring souls at the Houston Art Car Parade! We were fortunate to meet and greet some of the 300,000  Houstonians who turned out for this year’s event!

Oh, and just look at the vehicle that just happens to be in the background from the Houston Chronicles’s website below!

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Click here to link to the Chronicle article!

See all the great photos at the Just Ask Foundation Flickr Page!

To those at the parade who asked how they could donate, just click here! It’s the official Just Ask World Tour gofundme account! Thank you for helping Reggie accomplish his mission!

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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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ABOUT NEUROFIBROMATOSIS (NF):*

Neurofibromatosis, or NF, is a common, yet under- recognized genetic disorder that can cause tumors to grow on nerves throughout the body.

• NF is more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined.

• NF occurs in one in every 3,000 people and affects millions worldwide.

• NF can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain.

• NF can arise in any family regardless of race or ethnic origin. Roughly half of all cases arise in families with no history of the disorder.

• NF has three distinct forms, NF1, NF2, and schwannomatosis.

• NF research is shedding new light on several forms of cancer, brain tumors, bone abnormalities and learning disabilities, ultimately benefiting the broader community in addition to those with NF.

• Progress toward ending NF is being made every day. Because of Children’s Tumor Foundation funding, there are over 40 on-going NF-specific clinical trials in existence, and 44 NF Clinics nationwide.

* Above information was provided by the Children’s Tumor Foundation (CTF.org)

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Just Ask! T-Shirts

The shirts say you care. Order yours here!

If you’d like to order your very own, “official” JUST ASK! t-shirt, you’re at the right place. T-shirts are available in adult small, medium, large, X-large, 2X-large and 3X-large. The men’s shirt is available in yellow, and the ladies shirt is available in blue, pink. or plum, with a fitted waist and a v-neck. Cost is just $15 per shirt + $5.00 shipping / handling with all proceeds going toward increasing awareness of neurofibromatosis. Thanks for supporting Just Ask!

Order t-shirts here!

 

Order Just Ask t-shirt

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!