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

Running for the Fabulous Four

As she stood on the San Diego course at miles four and eight, Melisa Callison felt the energy and excitement from the runners and spectators as she waited for her friend Dawn to pass. “For the first time I was able to see the leader runners pass by at lightening speed,” said Melissa, who has NF1 and runs with a prosthesis. “I realized how much I want to continue running.”

Due to a surgery in March, she had to withdraw from the San Diego Marathon, but there was no way Melisa would miss watching her friend Dawn cross the finish line of her first marathon. Dawn finished in 5:12:26, running for her daughter, Ava, who like Melisa, also has NF1.

Melisa recently attended a BBQ at Dawn’s house where there were three families with children with NF1. Two of the young girls have below-the-knee amputations and wear prosthetic legs. “It was good for them to meet each other and for them to see me, a grown-up who has prosthesis.” Melisa hopes to be able to spend more time with these girls as a role model, even though they are the ones inspiring her to get back to her running.”I have completed two 5k races, and I am slowly building back my stamina and endurance,” said Melisa.

Melisa has registered for the Rock ‘n’ Roll San Jose Half Marathon on Oct.  3, 2010, and she will be running on behalf of the fabulous four — a little group of four girls, with big hearts, who all share a journey ahead with NF. “I will endure so they and others like them don’t have to,” said Melisa. “I run for them because they can’t.”

Melisa has set a fundraising goal of $3,000, which will go toward research to lead to treatment and someday a cure for NF. “You never know whose dollar it will be that finds the cure,” said Melisa.

To read more about Melisa or make a donation to help the Fabulous Four, please visit Melisa’s fundraising page.

The Hardest Part is Putting on Your Shoes

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.”