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.
***

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.”

I’m writing to you today from sunny and warm Buenos Aires, Argentina.  Our NF Extreme Team is all here, healthy, and having a great time.   I think we are all a little sleep deprived at this point.  There is so much to do and see and not an abundance of time.  Yesterday, after flying all night, we arrived here at the hotel around 2:00 p.m. local time (we are two time changes east of the Eastern Time Zone).  Our flight out of Miami was delayed by about seven hours and the other half of the team flying from Atlanta beat us by several hours…not that there is anyone competitive enough on this trip to keep track of such things. We all went for a nice “leg stretcher” run in the 85 degree, 90 plus percent humidity at 4:00 p.m.,  before splitting up into smaller groups for various events in the evening.

Some quick introductions:
Dr. Jose Dominguez – a surgeon from Battlefield, Mo., who runs for his son Eric.  He is the informal head of the now infamous and international “Run for Eric” team.
Dr. Carl Price –Run for Eric Team; from Springfield, Mo., a plastic surgeon and a friend of Jose’s.
Kathy Price – Run for Eric Team; from Springfield, Mo., and by far, Carl’s better half; a pharmacist, motorcycle racer, and by all accounts awesome mom.
Dr. John Steinberg – Run for Eric Team from Springfield, Mo., a cardiothoracic surgeon.  Also a friend of Jose’s.  As you can see, we are in good hands medically on this trip.
Dr. Tim Billharz – Run for Eric Team; An OBGYN from Liberty, Mo., he is, like Jose, a human plumber, working in the same general region, but from a slightly different angle.
Coach George Haddad – Running for Gigi Kast. NF Endurance volunteer team coach, NASA Engineer, from Melbourne, Fla. – yup, a real live rocket scientist.
John McCarthy – Director Standard and Poors, from Holmdale, N.J.  John runs for his daughter and also serves on the Children Tumor Foundation’s Board of Directors.
George Franke – from the Holmdale, N.J. area and John’s father-in-law, and our team support person for the trip.
Chad Leathers – our 25-year-old mascot. Chad runs for his brother, Drew, and Chad is doing a wonderful job of documenting this excursion. Chad is presently from New York, N.Y., and he is a development officer for the Children’s Tumor Foundation.
Bill Hardy – from Harleysville, Pa.   Bill is the owner and president of Hardy Machine Company, two time Race Across America teammate, and part of the Ari’s Angels Team.
Bill Edmonds – from Erwinna, Pa.  Bill is the co-owner/president of B&G Manufacturing, two time Race Across America teammate and also part of the Ari’s Angel Team.
Steve Kendra – that’s me, from the bustling metropolis of Sellersville, Pa.  Running for my daughter Arianna.  I’m the director of the NF Endurance Team for the Children’s Tumor Foundation.

So, I don’t pretend to be an expert, or even knowledgeable on Buenos Aries by any stretch, but I’ll  mention a few highlights from my perspective so far about this beautiful city.  Buenos Aires has a population of about three million people within the city and about 12 million counting the suburbs.  It is a colorful, vibrant and proud city.  I went to a dinner/ Tango exhibition last evening at a local theater and it was spectacular.  As most will tell you, I’m not the type to go to see a dancing exhibition, but this was amazing.  The passion in these dancers, the dance, and in this city, is almost palpable.  This area is known for it’s wonderful red wine and delicious beef.  I had too much of both last night.

There are 18,000 buses and 30,000 taxis here in town.  Where we have the White House in DC, they have the Pink House where the President and other higher officials from the government  have their offices.  It’s only a few blocks from our hotel.   They seem to name things after important dates in their history here.  For instance, the “9th of July Avenue” is the widest in the world at 147 meters across, and I think I heard, 32 lanes of traffic.  We were stuck in that traffic for a while on the city tour this morning.  Argentina’s pesos are about 3.8 per American dollar and the best areas to go for dining are Puerto Madero and Recolta.  They don’t eat here at night until about 10 or 11; the restaurants aren’t even open until 8:00 pm.  Nightlife doesn’t start until midnight, and lasts through dawn. Smoking seems to be stylish and popular.  And, we noticed that there are many beautiful girls here who smoke.  So, we decided that perhaps like the melting ice caps, we should enjoy looking at both while they are still here to see.

Tomorrow, most of us are taking a day excursion to Uruguay (a 40 minute high speed ferry ride from here), which is supposed to be quite nice.  Uruguay installed a new president today and I believe Hillary Clinton is over there right now to honor the occasion.  This afternoon we have another run scheduled.  Tonight is the team banquet and informational session about the rest of our adventure.  There are a total of 99 of us running either the half or full marathon.  I think 85 are doing the full marathon and 14 doing the half marathon.  Marathon Tours has been excellent to work with so far, and bar none, everyone I’ve met has been friendly and fantastically interesting.  I had breakfast with Thom Gilligan, who owns Marathon Tours, this morning, and he filled me in on some of the almost unbelievable ropes he has had to jump through politically to make this event happen for us this year.  Oh, right I almost forgot, we’ll have a Norwegian Prince running with us too – more on that, and the other interesting teammates later.

I hope you are all healthy and happy at home.  We all truly appreciate the blessings in our lives that have enabled us to have this opportunity.

On behalf of the “End of the Earth for a Cure Expedition,”

Steve

PARTY
“It’s the whole enchilada baby,” says Bob Skold about this weekend’s Rock ‘n’ Roll Mardi Gras Half Marathon in New Orleans.  “It will rock, rock, rock.” Skold will leave Colorado to join Team Captain Lesley Oslica and NFE New Orleans runners for the race.

MOTIVATE
Rachel Malone is training and fundraising for the ING Georgia Marathon, which is quickly becoming one of our largest team events in 2010. Recently Rachel’s story of overcoming a brain tumor was in the news. Click here for Running Against the Odds: Rachel Malone’s Story. And, check out Rachel’s blog here.

The NF Endurance Cheer Zone at the Twin Cities Marathon will be back in 2010.

TAKE 2
We picked an easy number for you to remember since we’re changing things up a little this year.  In years past, registration has been in mid April, but this year the 2010 Medtronic Twin Cities Marathon registration will open on Feb. 2, 2010.  Mark your calendars, set an alarm, send yourself an e-mail or start thinking about it on your long run this weekend, but don’t forget 2.2.2010. Registration opens whether or not the ground hog sees his shadow. In 2009, this course had the sixth most qualifiers for the Boston Marathon. The 2010 field limit is 11,200, a number that typically is reached within a month.  Runners from all over the country enter this race. Twin Cities was recently ranked in the top 20 marathons among readers of Runner’s World magazine. Registration is online ONLY and available on a first come, first served basis. To register, visit mtcmarathon.org on Feb. 2nd.  We promise another raucous cheer section at mile 24.5. For more information, please contact Murray McCartan at (Enable Javascript to see the email address).

FALL
…for Chicago! Did you know that registration opens for the Bank of America Chicago Marathon on MONDAY, Feb. 1, 2010? So, this weekend call your running buddies and plan to make the 10.10.10 your next training goal. If we get 25 runners to choose “Children’s Tumor Foundation” when they register with the Bank of America Chicago Marathon, we can become an “associated level charity.” Translation? More exposure for NF. We have two fabulous team captains this year in Andy and Shelby Silvernail. This event will sell out too. Tell your friends and family to RUNFOR a reason in Chicago.

BLINK
Want to go for an evening run? In addition to donning your bright NF neon, check out these iBlink ear buds which blink LED lights as you listen to your favorite tunes.

SAY THANKS
Make your thank you last a bit longer by expressing your gratitude with a magnet. Kerri Gastineau did just that for donors who contributed to Team Andrew.  She made a magnet that included her picture and information about the team. Kerri used Vistaprint, but other places such as Kinkos offer custom magnet services too.

PLAN
Veronica and Rob Meza will have a training meeting for the Rock ‘n’ Roll San Diego Marathon (and half marathon this year too) and to rally members for “Team Destanie” this Sunday, Jan. 31, 2010. If you are up for the challenge, please contact Veronica at (Enable Javascript to see the email address). The meeting will be at their home (1342 Santa Cruz/Chula Vista, CA) at 2:00 p.m.

In other news…
- ONE MONTH and 1 day until NF Endurance takes off for the Antarctica Marathon. Check it out here. Runner profiles to come soon!

- Help us reach 100 runners at the ING Georgia Marathon in March. We are oh, so close to rockin’ the peach state with 100 runners in neon! http://bit.ly/cebUIG