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I didn’t imagine when I ran my first half marathon with NF Endurance in October 2008 that I’d be running my third on the other side of the country in 2010, or that I’d register for my fourth while my calves were still tight. Yet, here I am whittling down my times and racking up donations for a great cause!
I’m a Jersey Shore native, but my family and I had been living in Southern California when my son Michael, a friend and I signed up for Long Beach in 2008. Four days after we registered, my other son and NF hero, Gabriel, died tragically and unexpectedly. Despite the rawness of our grief, we decided to honor his memory by keeping our commitment to the team. There was little thought to race times, but we did raise more than $2,600 and had a wonderful, poignant day.
My family and I then moved home to central New Jersey and I ran the New York City Half Marathon with a tiny NF Endurance team in the blistering August heat of 2009. That too was an emotional, glorious race that finished yards from the World Trade Center site, and I raised another $1,220.
I knew my next event would have to be on my sandy home turf at the Jersey Shore. I was nervous about the April 17, 2010 date though, because the April weather here is generally miserable and I’ve never been a bad weather runner. My nightmare scenario was running on the boardwalk for 13.1 miles with icy, rainy wind blowing off the Atlantic and into my face. Long before April rolled around, I was contending with blizzards and torrential downpours.
I’m tri-vocational, don’t own a treadmill and didn’t belong to a gym. I got outside whenever I could, which was no more than once a week, beginning some time in February. By early March, I was able to get out more and gradually increase my distance. Still, I never ran more than twice a week and my longest run was 9.5 miles. I was sure this event would be my worst to date.
The weather report for race day was ominous. A looming storm that boasted rain, cool temperatures and 15-25 mph winds was the talk of the pre-race pasta dinner. Steve Kendra optimistically assured us it would blow over, but offered black trash bags for protection nonetheless. I looked out the window at the rain and groaned. Then I remembered he had just run the Antarctica Marathon, and I felt pretty silly for complaining about an ordinary Nor’easter’!
What a relief it was to wake up on race day to sun peaking through the clouds and wonderfully crisp temperatures. Unlike the lonely New York City race, I ran into team members throughout this run and gave CTF bracelets to a couple inquirers along the way. I even surprised myself by cutting another five minutes off my time! Now, if I can only get myself to stop taking pictures along the way, I might get it down below 2.5 hours!
As always, my husband Jeff was there to cheer on me and the team. Afterwards we had a great time reveling with them in our collective accomplishment. It was then that Jeff decided to take charge of my fundraising efforts. He’s retired with a physical disability, but spent many years as a highly successful salesman of quality products. I need his help because I haven’t yet met my fundraising goal for this event and I won’t close out the account until I do.
Picking up on an idea proposed by NF Endurance member Joe Gunn, we’re thinking about hosting a fundraising party for which I’ll cook and we’ll ask Jeff’s musical siblings to provide entertainment. A local radio host who follows me on Twitter is considering doing a radio spot with me as well. By the time we get to the Rock and Roll Half Marathon in Philadelphia on September 19th, we’ll have surpassed our Jersey Shore goal and will have our sights set on a new one: raising $10,000 for CTF and earning me one of those uber-cool NF Endurance windbreakers! See ya’ in Philly!
As I sat in a large conference room in a Las Vegas hotel, I surveyed the room looking at many faces that I had never seen before — faces that I could have met in the grocery store, or on an airplane, but would have had no connection with before now. There were people of all ages. Some faces were pleasant and smiling; others were heavy and obviously burdened with concern. Some faces showed joy despite uncertain circumstances; others expressed happiness just to all be together. However, in the midst of 100 individuals listening to the presenters explain the challenges of NF, I saw it very clearly – the one aspect that we all had come to learn about: the many faces of neurofibromatosis.
There were young professionals, middle-aged parents, wise physicians, ordinary individuals, and others with and without a direct touch to NF in the room. We were a beautiful assortment of people; a group united because of a disorder that has come to cause such disorder in our lives.
We were encouraged as we formed smaller groups by geographic region, providing time to get to know each other better. We ate together. Some cried together. We learned together. New friendships formed. Many had only met via phone or social networking. By the last day, however, we had even walked together along the streets of Las Vegas and experienced a surprise visit from Elvis. After spending hours in conference rooms, dining facilities and yes, even the casinos, we all became a part of the bigger NF family.
Clearly, we all were there for one cause. While there are many faces to neurofibromatosis and its progressive effects on so many lives, the best and most beautiful one that we took home is this: the shared face of hope.
Let us continue walking toward the goal of the cure so that we will see an end to NF as we know it.
Keep hope alive!
Tracy Draper is the team captain coordinator for the NF Endurance team.
Watch the slideshow below to see some of Tracy’s photos:
She can run, bike and snowshoe thanks to her strong recovery after multiple surgeries, tests and scans while battling schwannomatosis.
Roxanne Thomas holds up her snow shoes which she uses for winter cross training.
In addition to running, Roxanne Thomas, an NFE team caption from Hayward, Wis., also participates in snowshoe racing. For Roxanne, it’s just one more tool in her fight to find a cure for NF.
Roxanne started snow shoe racing in the winter of 2006 as a cross training buffer for running. “You may run on many surface conditions in a race; wide, nicely groomed ski trails, packed down single track trails, deep, loose, ‘snow-pit’ snow, and ungroomed ski trails,” said Roxanne. “If you aren’t the fastest snowshoe runner, someone may pack it down a bit for you.”
In the winter she adds snowshoes to her gear list . “You race on very small, lightweight aluminum snowshoes that are made for running and racing,” said Roxanne. “I wear a lightweight trail running shoe with them, that you would wear for any trail running.”
For Roxanne, the snowy surface provides a cushion compared to the pavement. Most snowshoe races are a 5K or a 10K, but a rare half may be found. She likes the 10Ks the most.
In March of 2007, Roxanne qualified and ran in the National Snowshoe Championships, in Minneapolis, Minn. She had to take some time off due to medical reasons, but in December of 2008, after receiving medical clearance to go back to running, Roxanne was back. She started in snowshoe running to prepare for road and trail running events.
She joined NFE in March 2009. And, even though she decided not to go, Roxanne qualified for the National Snowshoe Championships again for 2010. “That was exciting for me, I felt good about getting it all back,” said Roxanne.
Roxanne has created a video about her journey; it’s a way to share with her family and friends about her diagnosis of schwannomatosis and her involvement with NF Endurance.
On May 1, 2010 she will participate in the RTC Spring Classic in Rochester, Minn. The event offers 15K & 5K races. You can E-mail Roxanne at (Enable Javascript to see the email address) for more information. Be warned, she might just have you in snow shoes before you know it!
Roxanne’s love of running and passion to find a cure for NF, was recently featured inSharing Mayo Clinic.
