Nathalie Trytell, beloved sister, daughter, spouse and friend, passed away March 4, 2011 at 32 years old. Her family has suffered a tragic and painful loss but remain in awe of Nathalie’s incredible strength and courage in fighting NF2 for over 17 years. Her family is planning a memorial service to celebrate her life.

Despite everything she endured, Nathalie had so much love surrounding her in life which is what kept her fighting. Nathalie lived her life to the fullest with a capturing presence and was vibrant, creative, inspiring and loving. Her incredible talents as an artist and writer are a treasure and a legacy that will remain with her loved ones as a beautiful memory. Her family would like to thank CTF and the entire NF community for their support and love which definitely filtered through to Nathalie.

We ask that you keep Nathalie and her incredible spirit in mind as you train this week.

Then marvel not, thou great and complete man,
That all the Greeks begin to worship Ajax;
Since things in motion sooner catch the eye
Than what not stirs

I decided that I would set a goal of running 50 marathons and raising $50,000 to catch the eye of my donors. I do RUNFOR A REASON. Go to: www.504NF.com (smile here) and you will see several of my reasons.

For every marathon, I paced myself, finished strong, and never forgot that it’s not the speed but the purpose of the journey. This really kept me motivated and helped me to avoid a running injury. I also want to say that for every single marathon I picked up the pace at mile 20 or 22 , felt the warmth of God’s smile, experienced an almost overwhelming sense of freedom and joy, and an intense emotion of feeling alive. I thought I was the happiest person in the world! Yet there were some times during the run when the lives of my NF heroes came to mind. I thought of their struggles and pain living with NF, and I literally cried. If someone asked me my finish time, I would have to say, ”Well, it could have been better, but I stopped a few times to shed some tears.”

Having now achieved my goal, I will candidly say that I’m elated, or let’s say relieved and grateful for the gift of running and the gift of my health. I also find myself thinking, “What’s next?” I certainly want to keep running until a cure is found, and after that will want to raise money to make NF treatments affordable. The answer? My running never ends!

Well, marathon 51 was last weekend at the Surf City Marathon so only 49 to go for 100. Woo Hoo!

Bob Skold
Team Development

Tony taking a break during the run.

Tony Mixon, a long time NF Endurance team member, has undertaken the run of his lifetime. He is close to finishing a 360 mile run from Jacksonville Beach to Miami Beach! Tony shared this about his own journey with NF via the Facebook page dedicated to his run.

“… My first symptoms/problems began in 1988. I suffered from extreme headaches and dizziness. Upon visiting many doctors and undergoing numerous tests it was determined that I had a very large brain tumor. After 2 surgeries the majority… of the tumor was removed but not without collateral damage. I was left with facial paralysis and deaf on the right side. However, with support of my families and wonderful wife life got back to somewhat normal. I was unaware that what I had was considered neurofibromatosis type 2 or NF2. I later would undergo more brain tumor surgeries as well and spinal cord tumor surgeries, the latest being in August of 2009.”

Tony is running to raise money for a cure and to raise awareness for NF before the disorder makes it impossible for him to run. He has a little over 50 miles left on his journey and is projected to finish mid-day Tuesday at Indian Beach Park in Miami Beach. Tony’s support crew is asking for as many people as possible in the Miami Beach area to join them as they cheer him to the finish. You can track Tony’s progress at http://bit.ly/TrackTony.

On behalf of all of the Children’s Tumor Foundation staff, the NF Endurance team staff would like to thank Tony for his dedication to finding a cure. Passionate people like tony are the ones driving us closer to a cure for NF every day.

(If you can’t make it but would like to offer words of encouragement, visit Tony’s Facebook page at http://www.facebook.com/TonyMixonFightsNF. His family and friends will be more than happy to share your message.)

All of us here at the NF Endurance office would like to ask you to keep NFE team member Sarah Johnson in your thoughts this week. Sarah is preparing to undergo emergency surgery to remove a tumor at the base of her skull at 1 PM today. Her family says her spirits remain high. Sarah ran the Long Beach Marathon and the San Diego Marathon with us last year and raised over $10,000 for NF research.  Her neurosurgeon is optimistic expects Sarah to make a full recovery and be able to run marathons again.

Sarah’s family is collecting stories, jokes, and well wishes to read out loud to her at the beginning of her recovery that she can reread later. If you would like to contribute, please email us (Enable Javascript to see the email address) and we will be sure share them with her.

Infiniti Headband $14.00

Not done with your Christmas shopping for your favorite runner yet? This Brooks Infiniti Headband is perfect now that the temperatures are getting colder. It is a bright and comfortable headband with the NF Endurance logo over the left ear. The headband also has reflective material on the back to make runners more visible in low light conditions. BUY NOW

DID YOU KNOW: Our prices for Brooks products are comparable to the price you would pay at most stores. The only difference is our products have the NF Endurance logo and all profits from our store fund research to cure NF.

Visit http://ctf.org/store to check out all our products.

Our Research Team Needs Your Help…

Dr. Kim Hunter-Schaedle, our Chief Scientific Officer, is requesting your help as the foundation plans how it will fund research over the next five years. The last time this strategic plan was updated was in 2006. Input from the NF community was instrumental in the planning process that has led the foundation in funding over $7 million dollars in research for a cure. Please take a moment to visit this page for more information. http://www.ctf.org/For-Scientists/2011-strategic-plan-request-for-ideas.html We want to know what areas of research are important to the NF community.

From Dallas to Vegas, NF Endurance Rocks!

We hope you will join us as we wish our runners in Las Vegas and Dallas this weekend as they race for a cure. The runners in both races have raised a combined $14,000 for a cure. If you know anyone running this weekend, be sure to send them an encouraging message via email or Facebook. If you don’t know anyone feel free to offer words of encouragement on the NF Endurance Facebook page, and we will share it with them.

Women's 1/2 Zip Essential Pullover

NEW BROOKS GEAR PLUS FREE SHIPPING ($50+)

Molly has been working hard this week to get new gear into the team store. The additions include a Brooks Women’s 1/2 Zip Essential Pullover, Brooks Men’s 1/2 Zip Infiniti Pullover, Brooks Spartan Pants, and an “It’s in you. It’s possible” long-sleeve shirt. Also, just in time for the holiday shopping season, the store is now offering FREE SHIPPING ON ALL ORDERS ABOVE $50!!!

DID YOU KNOW: Our prices for Brooks products are comparable to the price you would pay at most stores. The only difference is our products have the NF Endurance logo and all profits from our store fund research to cure NF.

Visit http://nfendurance.org/store to check the new products out!

A RACE ALREADY RUN…

Is worth two not run yet. Or something along those lines… As most of you know, this weekend is the NYC Marathon! The NYC Marathon is one of our team’s biggest fundraising successes every year. This year we have over 60 runners racing with us who have already raised over $140,000! That’s quite the achievement! We also have 14 runners doing the Amish Bird in Hand Half Marathon in Lancaster, PA on Saturday. Bruce Rickert was unable to run the Philly RnR Half Marathon in September due to an injury. He challenged his fellow teammates to join him for the Bird in Hand once he had healed. For every runner who signed up with NF Endurance for the race, Bruce is donating $200. Thank you Bruce for your commitment to the team!

World Run Day Logo

WORLD RUN DAY: NOVEMBER 7, 2011

It’s that time of year again! World Run Day is a running event held for over ten years to celebrate the sport and charitable giving. And, another excuse to wear your NF singlet on the course. If you are not already running a race this weekend, find a group celebrating near you by clicking here.