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Rochester NF Walk in the News [Video] PDF Print E-mail

 
Racing4Research Takes the Checkered Flag at VIR PDF Print E-mail

(Danville, Virginia) -- This past weekend the rolling hills of picturesque Virginia International Raceway were the scene of an epic battle between two drivers at the top of their game. Although the two-and-a-half hour race was marred by a number of caution periods, the last twenty minutes featured the top Street Tuner-class cars trading places on nearly every lap, leading to a dramatic conclusion in the Continental Tire Sports Car Championship event and seeing two-time series' champions Compass360 Racing taking their first win of the season.

With Ryan Eversley's regular co-driver Keith Carroll unable to make the event due to business commitments, Team Principal Karl Thomson was drafted to start the #75 HPD / Racing4Research.org Honda. He qualified 20th, with team-mates David Thilenius in the #74 HPD / JC Concrete Honda ahead in 8th, and Dan Rogers in his #77 HPD / Speed Secrets car close behind in 29th.

With the team still struggling to overcome a Grand-Am-mandated restrictor fitted to the Civics at the beginning of the season, Technical Director Ray Lee knew calling pit strategy would be the key to a good result. "We had to roll the dice today, go for a really early stop to gain track position, and hope for enough caution periods to extend our fuel window," he explained.

Rogers was caught out when a competitor's engine blew, covering the track at the end of the front straight with oil. The #77 car slid on the slick surface, and tagged the wall at the outside of corner one. He was able to return to the track and pit, but unfortunately lost a lap in the process. His co-driver Andrew Novich then turned laps on par with the leaders but despite some great strategy by Crew Chief Steve Wheeler, was never able to get his lap back.

At the first yellow flag, Thomson handed over to Eversley, setting up a flurry of fuel calculations in the C360R pit. Thilenius pitted at the second yellow, giving #74 to Zach Lutz. This put both cars in close proximity on the track and meant a steady move to the front as other teams pitted for fuel on a less risky strategy.

Fortunately, the gamble paid off and as the final caution of the race was lifted with 20 minutes to go, Eversley and Lutz were ready for heated battles well inside the top ten. In the closing stages Lutz and one of the Minis tangled while battling for 7th, resulting in a drive-through for Zach, putting him back to 18th position. Eversley, meanwhile, was in the midst of that aforementioned epic battle with the BMW of Nico Rondet, a fair fight between two drivers showing great respect for each other. Lap after lap the lead would swap between the two, with Ryan having a small lead through the downhill esses on the last lap. He finished narrowly ahead, giving C360R it's first win of 2011.

"Thanks to Keith, Karl and Ray and the whole team," exclaimed Eversley. "It was a great fight with Nico, he was fair and we gave each other room. He really made me work today, and this is a sweet win." 

Eversley and Thomson were joined on the top step of the podium by Cameron, the young man being an honoured guest of the team's charity, the Children's Tumor Foundation. "Cameron's a really sweet kid who is living with neurofibromatosis, a life-threatening illness," explained Ryan. "It was very special to share our win here with him and his family." Donations can be made at http://racing4research.org.

The win puts Eversley and C360R back in the championship hunt, with just 13 points separating the leaders and Ryan, now sitting in fourth place. "We've still got to deal with the performance affect of the restrictor, " noted Thomson, "but the win means we're still in the fight. This whole team is trying harder than ever to get a third straight championship."

The race will be televised on SPEED at 1:00pm on May 22nd.

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Compass360 Racing (C360R) is the motorsports division of Compass360 Branding Communications, a Toronto-based firm offering marketing expertise to clients in diverse industries across North America. The team, with support from Honda Performance Development (HPD), fields four front-running Honda Civic Si's in Grand-Am's Continental Tire Sports Car Challenge, winning series Championships in 2010, 2009 and 2007. It won the Canadian Touring Car Championship in 2010, and also fields three Hondas in SCCA World Challenge. For details visit http://C360R.com.

 
CTF Ambassador Nick Gilbert at NBA Draft PDF Print E-mail

2011 National Children’s Tumor Foundation (CTF) Ambassador Represents Cavaliers @ NBA Lottery

Nick “Picks” Gilbert To Take Stage for the Wine and Gold!

Courtesy of www.cavs.com – The Cleveland Cavaliers today announced their representation at the upcoming NBA draft lottery in Secaucus, New Jersey next Tuesday, May 17th.

On stage as the official Cavs representative will be 2011 National Children’s Tumor Foundation Ambassador, Nick Gilbert who is also the 14-year-old son of Cavaliers Chairman and Majority Owner Dan Gilbert.

Serving as the team’s observer in the separate room where the ping-pong ball “lottery” drawing actually takes place, will be Cavaliers Vice-Chairman and Minority Owner  Jeff “The Inspector” Cohen. Dan Gilbert will also attend and observe the stage production.

As the 2011 CTF ambassador, Nick’s role as the Cavaliers representative on-stage comes with important additional responsibilities. The Children’s Tumor Foundation (CTF) www.ctf.org is dedicated to improving the health and well-being of the more than 1 in 3,000 children born with Neurofibromatosis (NF), a nerve disorder that causes tumors to grow anywhere in the body at any time. May is also NF Awareness Month and, coincidentally, May 17th is also World NF Awareness Day. Nick was born with NF and has successfully and courageously battled the disease his entire life.

“We talk a lot about hero’s in sports but sometimes we overlook the hero’s that are in front of us every day. Nick Gilbert was born with NF more than 14 years ago. Despite enduring brain surgery, the loss of vision in one of his eyes, four long rounds of chemo therapy and countless visits and time in doctor’s offices and hospitals, he has emerged as the happiest and most optimistic person I know. Nick has never complained a single time about the bad card he was dealt, and instead, chooses to focus on all that is good and exciting around him. He is an example of perseverance, determination and life the way it should be lived. Nick is my personal hero. BTW….The kid is also quite lucky, which Cavs fans should take solace in, since he is representing us in the lottery on Tuesday evening!” said father of Nick and Cavs owner, Dan Gilbert.

As part of Nick’s role, he will be using social media to share his special experience as the Cavaliers official on-stage representative via his Twitter account @CavsNick.

Nick will be Tweeting starting immediately and continuing through the lottery event, including behind the scenes photos and special chances to win exclusive Cavaliers, Fathead and other very special prizes. In addition, followers can help support the fight against NF by simply texting CTF to 20222 to donate $10 or visiting www.ctf.org/cavsnick to make a donation. Fans and media alike are invited and encouraged to follow @CavsNick on Twitter and re-tweet Nick’s tweets to share the fun and help the cause. To “follow” @CavsNick, please visit www.Twitter.com/CavsNick now.

The Cavaliers and Dan Gilbert will together match dollar for dollar all funds raised for CTF from this initiative running up through the NBA lottery.

“I am pumped up to rep the Cavs in New Jersey at the NBA Lottery this Tuesday night. I will do everything I can to help bring the highest picks to Cleveland as well as raising additional funds for the foundation,” said the teenage Gilbert.

The Cavs currently have two 1st round lottery picks plus two second round picks in the upcoming 2011 NBA Draft which is taking place on June 23rd.  The lottery drawing on May 17th will determine the order in which the lottery teams choose their draft picks. The Cavs have the second most ping pong ball combinations in the lottery with 227 (out of 1,000 total combinations used in the elaborate NBA lottery system). This represents 199 combinations obtained via the Cavaliers own pick, plus an additional 28 combinations with the lottery pick acquired from the    Los Angeles Clippers as part of the deal made with the Clippers at the trade deadline this season. The 2011 NBA Draft Lottery will be broadcast live on ESPN TV next Tuesday, May 17th starting at 8:00 p.m.

 
NF1 Research Study: Participants Needed PDF Print E-mail

Research Study

PARTICIPANTS NEEDED

                                Minimal criteria for enrollment: Person(s) with confirmed diagnosis of NF1 and scoliosis

Dr. David W. Polly, Jr. of the University of Minnesota-Department of Orthopaedic Surgery and

Dr. Christopher Moertel of the University of Minnesota Department of Pediatrics are conducting a study entitled:

Genetic Evaluation for the Scoliosis Gene(s) in Patients with Neurofibromatosis 1 and Scoliosis

For further information please contact:

 

Barb Rogers, Spine Research Coordinator - 612-273-8082 This e-mail address is being protected from spambots. You need JavaScript enabled to view it

or

Charles Ledonio, M.D. Spine Research Associate - 612-273-8035 This e-mail address is being protected from spambots. You need JavaScript enabled to view it

                                                                                                                                                                 612-273-1177

 
Stories of NF: Aaron PDF Print E-mail

 

Ed note: During May, NF Awareness Month, we will be posting stories of individuals and families living with and overcoming the challenges of NF.  If you'd like your story to be featured please email This e-mail address is being protected from spambots. You need JavaScript enabled to view it with an article of approximately 500 words, and your picture (or your family's picture). If you like this story please share it with your friends and family via email, Facebook, Twitter etc.  To help spread awareness this month we are also introducing the tagline "Help make NF Not Forever'" and the Twitter hashtag #NotForever, together we can do wonderful things to promote NF awareness and research, thank you for your commitment to the cause. 

Hi my name is Aaron, I am going to talk about my experiences living with NF.

I was diagnosed with NF when I was about 3 years old. The way NF affects me is mainly from scoliosis, my spine has two curves. I had a spinal fusion when I was 8 on the upper curvature. I have several neurofibromas on my chest and back, but they don’t really cause problems, apart from a large plexiform on the side of my trunk. I am also dyslexic, so needless to say primary School was an interesting experience! 

The problems I have experienced with NF are both medical and personal.

Since the spinal fusion I hadn’t had any issues with NF until 2004 when I started to experience chronic lower back pain. I went to my GP who prescribed some meds for me, but the pain didn’t go away. Fearing there could have been a change in my scoliosis and the fact I hadn’t seen him for over 10 years I decided to see my orthopaedic surgeon.  He concluded that there were no new issues with the scoliosis and that because of the curvature I would be more prone to back pain.

Then I went to a neurologist because I hadn’t seen one since I was a teenager. I had an MRI which showed no Neurofibromas on my spine.

I was then referred to a new doctor.  He said that eventually the lower back would need surgery too but it would be 20 or 30 years down the line. He suggested that pain management was the best solution. The pain specialist recommended an epidural injection containing a slow release pain medication.

Today between the injections and Meds the pain level is under control, unless I’m up dancing half the night.

On a personal level NF has affected me too.

Even though anti-discrimination laws exist in my experience some employers still don’t treat people with medical problems the same as “normal” people.

I have gone for lots of interviews in the past for jobs that I could do. I am not saying every job I have never gotten was only because I have NF. But some employers only see the small guy with the hump on his back and not the potential I would bring to their business.

Another aspect in which NF has affected me is the difficulty in meeting a partner or the way people stare at me.

We live in a very materialistic world where image and look are more important than honesty and integrity.

I’m not going say that “Being Different” doesn’t leave me feeling a little blue at times.

There are times when I wonder what my life would have been like if I didn’t have NF.

What job would I be doing?

Where in the world would I be living?

Would I still be single?

These are all questions that I will never have the answers to.  I came to terms with having NF a long time ago, I just wonder sometimes. 

When I look in the mirror I like the person I see and I think most the world does too.

Having NF hasn’t stopped me doing some of the things I love.

I believe there is a plan for everyone and I have faith that things will be alright in the end.

 
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