This post is adapted from the author’s original post on her blog, NF2 Odyssey. The author, a brain and spinal tumor survivor, shares her excitement about happily “earning bling” at the Seattle Rock ‘n’ Roll Half Marathon in June after brain surgery seven months earlier.

By: Rebecca Dufek

Pleasantly the Seattle Rock ‘n’ Roll Half Marathon on June 26th went very well for me despite the difficulties I had during training with severe anemia, which resulted in mental and physical fatigue and hamstring tendonitis. Honestly after the first month of training, I had concerns about whether I was going to need to walk or walk/run this one.

I questioned if it was just too soon post a major brain surgery to take on this demand on my body (four brain tumors operated on only seven months prior to the event). However, if I was going to do it, I was committed to following through and honoring my word of running and raising money for the NF community.

This year being my second half marathon run was pretty exciting as I not only was part of a team, but my husband and sister were also running the half marathon with me. There is nothing like teammates to motivate you, especially for something as grueling as a marathon. The night before, Harley and I had a great time at the pasta dinner with the Seattle NF Endurance Team, which had people from various parts of the country. We learned stories of other NF patients. We  learned more about the meaning behind running or walking for this cause. I finally got to meet the infamous Steve Kendra who is director of the NF Endurance Team and traveled out from Pennsylvania for this event. I have been cooresponding with Steve for years.

Every year when I engage in an endurance event for a cause, I am greatly moved by meeting truly altruistic people who choose to take on this kind of challenge and raise money for a cause out of the goodness of their hearts and have no connection to NF or any other cause. These kind of people are truly amazing heroes to me!

The morning of the marathon my sister and I lost track of my husband Harley. There were thousands of people!!!! I heard there were at least 27,000….the largest event I have been in by far. My sister Michelle and I started out together in the same corale, which was rather special. Therefore, I had to do quite a bit more weaving in and out of people as well as passing.

I had no idea what my finish time would be this year because I had such a hard time training. Thus, I did not have a good estimate for my starting corale, but I really enjoyed starting out with my sister. I knew for certain that I finished just under my finish time from the year prior. Amazingly, however, I finished in just over 2:05, nine minutes faster than last year!! So I definitely earned the huge bling they draped around my neck when I crossed the finish. But even more than my physical effort to earn the medal, I fulfilled a promise to raise research money for the NF community. That is the part that is important: Running for a Reason. Thank you to all of our supporters and my parents who came up to join us in celebrating/cheering us on! We love and appreciate you greatly! Thanks for helping us to earn that “bling.” If you are just learning of my event now or did not get a chance to donate, there is still time if you would like to contribute to NF research. Just visit the following link to make a secure donation online. http://www.active.com/donate/nfseattle2010/RDufek1

Rebecca Dufek is an endurance athlete has battled brain and spinal tumors because of her NF2. You can read more about her journey on her blog, NF2 Odyssey.

Two brain surgeries, one spine surgery, four eye surgeries, one auditory brainstem implant, and he’s one of the lucky ones, he said.

Matt Hay has Neurofibromatosis, Type 2, but while NF makes some things in life a bit harder for him, Matt hasn’t found anything that has been impossible.

Following a spinal surgery to have one of these tumors removed, Matt was unable to stand or walk. “I remember asking the doctor if that function would return and he replied, ‘It should,’” said Matt. “Should? Uh thanks.”

Months of physical therapy took him from a wheelchair to a walker to a cane. “I then made up my mind that I was going to celebrate my progress by running a marathon on the one-year anniversary of that surgery while raising some money and awareness for NF at the same time.”

That was a few marathons, half marathons and triathlons ago, but since there isn’t a cure for NF, he keeps lacing up his shoes. When his daughter, Maddie, was two, she said, “Daddy, maybe I’ll fix your ears for you.” It has been two years now and Matt jokes that her neurosurgery skills haven’t improved and he still will run for a reason — curing NF. He and his wife, Nora, will be on the course at the Indy Mini Marathon wearing on May 8, 2010.

“I think what CTF is doing is amazing,” said Matt. “This increased presence at events is also evidence that what the CTF team is doing is really working in terms of raising interest, awareness, support and money.”

Matt first found about NF Endurance after meeting Steve Kendra one year during the Chicago Marathon. “His [Steve's] enthusiasm and support really raised the bar in the professionalism, organization overall team spirit of the event,” said Matt. As a result, he and his wife, Nora, have run as part of the NF Endurance Team in many more races including the Myrtle Beach Marathon and the Indy Mini Marathon. His goal for the 2010 Indy Mini is $7,500 and he has raised $6,988.79 to date.

Matt and Nora have helped the team as both runners and supporters and find both roles equally challenging. Navigating closed streets and the ‘L’ in Chicago, surrounded by close to one million people at 7:00 a.m. on race day, can be just as tiring as running 26.2 miles. “I want all of my friends and family to know that for the runner nothing about the race is as rewarding as seeing such great support cheering and holding signs up when the miles seems to get longer and legs get heavier.”

And even though he has multiple races logged, there are still days when he can’t find the time or energy to run. Matt champions the words,  “the hardest part is putting on your shoes.”  “Once I get my shoes on, everything else seems to fall into place…know that you aren’t alone and that most people crossing the finish line on race day started that way too.”

He has chosen to focus on the things that he can do. He has poor balance and can’t ride a bike; he finished his first triathlon on a recumbent trike. He has nerve damage from brain surgery that causes his left eye to  get dry; he bought sunglasses with foam lining. And, he jokes that his 4-year-old can almost read now because she has never seen a TV in their house without closed captioning.

A few years ago Matt was told that he could get a discounted train pass for his daily commute to work because of his hearing loss.  “I remember thinking, ‘Wow, these train people think I’m disabled,  but I bet they aren’t running marathons!”

“Having NF is just a part of who I am,” said Matt. “I don’t know if it is by choice or circumstance, but I ‘m fortunate to have a pretty positive outlook on my life.”

Kevin Wales (left) and friends at an LSU tailgate.

Kevin Wales finished the Rock ‘n’ Roll Mardi Gras Half Marathon in February, raising more than $5,000 for NF research. For Kevin, who has NF1, this half marathon meant much more than completing 13.1 miles. “It meant doing something that at one time in my life would have been inconceivable,” said Kevin.

Kevin broke his right femur in March 1991 when he was in eighth grade. He was in the hospital, had to have to his leg in a cast, enduring many days of physical therapy. It took months for his leg to be back at full strength. Kevin’s orthopedist had to write a letter to his high school exempting him from physical education courses because of concern for further injury. Although Louisiana required two years of physical education to graduate, his doctor’s letter trumped the requirement; he had to take alternate courses instead.

So when Kevin crossed the finish line of the Rock ‘n’ Roll Mardi Gras Half Marathon, it meant much more — accomplishing something he never thought possible. “To be able to run 13.1 miles after nearly 19 years after that life-changing event, is, well, life-changing in and of itself,” said Kevin.
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Fundraising Secret: Modify letters. Kevin sent out more than 100 letters to his friends, family and community members. However, he tailored letters by how well the recipient knew him and how much they knew about what NF has done to him. For example, because his sister and three of her five children have NF, he could cut out how NF affected him personally.  For other letters, he had to be more specific, without getting into too much detail, as he wanted to keep the letters down to one page only.

Training Tips: Start small. When he started training in the latter part of June of 2009, Kevin could barely finish three miles. His first goal was four miles, then five, until he could gradually increase his mileage to double digits. “Once I started focusing just on distance and ignored speed, I noticed that my speed on race days increased!” said Kevin. “When I was able to run 12 miles in late January and didn’t feel any pain afterward, plus no soreness the next day, I knew that I was ready.”