Caring Run: Celebrating the Life of Nathalie Trytell

Nathalie and her family have been active supporters the Children’s Tumor Foundation. This entry was written by Nathalie’s brother, Matt.

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.

Bob Reflects on Running 50 Marathons

Completing 50 marathons was a goal I set three years ago. I thought this kind of commitment and effort would demonstrate my strong desire to raise money for treatments and a cure for NF. I wanted “to be the change I wish to see in the world.” I have been raising money as a member of the NF Endurance team since 2000. (This was back when we were wearing green running singlets instead of the sporty, sleek, neon yellow ones we have now.) I needed to raise the bar higher to keep my donors attention and interest. I took a cue from Shakespeare, who wrote:

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

NF Hero Spotlight: Tony Mixon to Finish 360 Mile Run in Miami Beach

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.)