Weekend Pacesetter (May 7-9, 2010)

STRIKE OUT NF
Join the Tyrybon Family for the fourth annual “Bowling with Noah” to benefit the Children’s Tumor Foundation on Friday, May 7th at Parkway Lanes in Trenton, Mich. The $15 ticket covers three games, shoe rental and pizza. Please RSVP to (Enable Javascript to see the email address) with the names of your team so they can reserve a lane. To learn more about Noah and the Tyrybon’s mission to find a cure, please visit Team Noah.

TEND BAR
Jill Cromwell be the guest bartender at Epstein’s Bar (82 Stanton Street/ New York, N.Y.) on Friday, May 7th in her fundraising efforts for the ING NYC Marathon. She’ll be there from 8:30 p.m. – 2:10 a.m., but if you can’t make it out, you can check her fundraising page.

READ
JoAnne Pastel, the founder and creator of the Bur Bur and Friends Children’s Books series, recently added a new character to her line up. Nina is Bur Bur’s 2-year-old sister and she has NF1. Pastel will be doing promotions as well with the proceeds coming to the Children’s Tumor Foundation. Click here to meet Nina and friends.

INDY MINI
Joe Gunn will captain NFE at the OneAmerica 500 Festival Mini-Marathon, leading more than 30 runners on May 8, 2010. The NFE Indy Team has met their fundraising goal, raising more than $13,000 for NF research.

THANK MOM
The NF Endurance Team is full of inspiring people and we are lucky to have a lot of great moms who set an example of meeting multiple goals every day. Many volunteer their “spare time” to help make our events successful. A special thank you to the ladies in the Endurance office: Trish, Beth, Suzanne, Molly, Valerie and Tracy. These women work so hard to ensure that runners have a memorable experience while also balancing being full time moms.

If you are interested in running on Mother’s Day, Active has a list of runs dedicated just for mom. Find a race near you here.

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.”