They say, "what happens in Vegas, stays in Vegas", and I guess that is true on many levels, however, in this case, I would like to make an exception.

Last weekend, my husband, John and I traveled to Las Vegas as a belated anniversary trip.  As an added bonus, we planned to support the NF Marathon Team that was running the New Las Vegas Marathon on Sunday, Dec. 4.  We attended the Pasta Dinner on Saturday night, sponsored by Planet Hollywood, and after listening to the runners tell their stories of why they run for the NF Marathon Team and watching a video, which highlighted a number of our NF "heroes", including Aidan, I made an abrupt decision.  I decided to run the Las Vegas Marathon the very next day!

Sunday morning, John and I got up at 4 am, met our teammates for breakfast, and then headed out for the 6 am start.  It was about 38 degrees and 15+ mph winds.  Having just run the NYC Marathon 4 weeks ago, I wasn't sure whether I would be able to finish, so John and I ran the first 10k together.  Kudos to John who ran his first 10k ever!!!  Still feeling good at that point, I decided to keep going.  Heck, no one knew I was running back home, so if I wanted to bail out at any point, I could.  Despite the cold temperature, the brisk wind, and a popped blister on the bottom of my little toe at mile 19, I ran on!

I finished the race and took 24 minutes off my NYC time, even after stopping along the course to take pictures with a Gladiator from Caesar's, an Elvis impersonator, and to repair the blister.

I have met so many NF heroes through the NF Marathon Team program. And every time I meet someone new who has NF or runs on behalf of an NF Hero, I think of all of you who have been so kind and generous in your support and I want to tell you their stories so that you know you are supporting more than just Aidan and our family.  If you ever want to learn more about my friends and my heroes, please let me know and I will tell you how inspirational they are for me.

I am committed to running every year so that we can raise awareness and funds for research to enable a cure for NF. My next race with the team will be the Indy 500 Festival Mini-Marathon in May 2006. If anyone is interested in running this race or any other marathon, half-marathon, or triathlon with us, please let me know.  We are always looking for more runners and supporters for all of our races.

Wishing you all a healthy and happy holiday season,

Florence
Racing for Research to End Neurofibromatosis
www.active.com/donate/nfrunsnewyork/mccarthy

Erin was diagnosed with neurofibromatosis type 2 (NF2) sixteen years ago and has dealt with many changes as a result.

At Noah’s kindergarten graduation, when the kids were asked what they want to be when they grow up, Noah, among all the policemen, firefighters, and teachers was the lone "calculator.”

The now six-year-old Noah is excited about starting first grade this fall.  He enjoys bowling, baseball and golf.   
Noah was diagnosed with NF1 just before his first birthday, exhibiting café-au-lait spots and axillary freckling.       

“Since then, we've never noticed any other detrimental effects from the disorder,” said Frank Tyrybon, Noah’s dad.  “We visit specialists at the University of Michigan each year (which Noah enjoys because he doesn't get shots from these doctors) and they have yet to find any evidence of tumors.”

While the Tyrybon’s are fortunate that Noah has been on the mild end of the NF spectrum, they are not waiting for a chance for things to change. They are active participants with the NF Endurance Team.   “A big part of our motivation is to ensure that no other parents have to go through so many anxious months of uncertainty and unanswered questions like we did,” said Frank.
 

Candice Patterson has endured 19 surgeries because of NF which has caused tumors on her optic nerves and sinuses. In addition, she has had facial reconstruction and has been temporarily blind. Six weeks after her nineteenth surgery she finished the  Gasparilla Distance Classic by walking the 5K with the support of friends and family. She needed a goal. She needed something to get her out of bed and begin her recovery.

The day after waking from surgery, she walked around the nurses station, making the hospital bed her finish line. It felt like a marathon. She was completely exhausted and the pain seemed unbearable. Each day, with the help of the people around her, she walked a little further. The training began at the nurses station and with trips to the mailbox. With one foot in front of the other, she walked for six weeks, gaining strength, building endurance, and shaping her vision and purpose. She would not let this disorder take one glorious moment of her life away.

She continues to race in triathlon and running events for the NF Endurance Team. She will face more surgeries to treat neurofibromatosis. She realizes she has this disorder but she chooses to fight. She has no choice she says. She finds inspiration from the hundreds of people who do not have this disorder, who do have a choice, and choose to fight along her side -- her new teammates in the fight against NF. They fight for the same things that she does -- to raise awareness and fund a cure.