Weekend Pacesetter (July 16-July 18, 2010)

HOWDY
We’ve partnered with the Texas Neurofibromatosis Foundation to work toward ending neurofibromatosis (NF). Check out the story here.

BIKE
This weekend, more than 9 bikers will trek from Seattle to Portland in the Seattle to Portland Bicycle Classic. These NFE runners have raised more than $17,000, surpassing their goal of $10,000. Check out their fundraising efforts here.

PARTY
Games, prizes, food and fun at the NF Carnival to benefit the Children’s Tumor Foundation in Glen Cove, N.Y. Hosted by NFE Runner Laura Perfetti. Last year, the Perfetti’s and their friends raised $6,075 for research from Carnival proceeds. Check out more information here.

WALK
On Sunday, the third annual Green Bay Connected for a Cure NF Walk will take place in Green Bay, Wis., (read more). The walk will be at the Bay Beach Amusement Park and Wildlife Sanctuary. For more information, please contact Traceeann Adams ((Enable Javascript to see the email address)).

Active Fundraising Page of the Week
Sally Richards
Why we like it: Sally Richards has decided she will be the CEO of NF2. Her active page has become her “formal business plan” as she fights for a cure. Check out how Sally has raised more than $3,000 so far in her training for the Rock ‘n’ Roll Chicago Half Marathon — click 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.”

Georgia on My Mind

ING Georgia Marathon • March 21, 2010
*RACE DETAILS HERE*
NF Endurance Georgia Team website
*Make sure to sign up before Jan. 1, 2010 and you can beat the price increase. Don’t forget to type in the special team code.

Meet Karen Trommer ((Enable Javascript to see the email address))

Favorite race day tradition - This race is our annual tradition. We bring the whole family and get an extended family member to come down and route for us and watch the kids. We love to have our kids routing for us on the side line and it just wouldn’t be the same without seeing Kate’s smiling face. We get a hotel room, attend the pasta dinner and make a weekend out of it. It is my favorite weekend of the year!!!
What does endurance mean to you? “I will endure what I need to endure so that my child won’t need to endure”.
Running mantra: Cure NF!
What is playing on your iPod - Well…..I don’t actually have an ipod, I use my phone. Also haven’t uploaded music in a while…………last year was “Down with the Sickness”. This year I will be listening to Jeremy Camp’s “This Man” if I can ever figure out how to download onto my new phone!!
If your shoe laces could be any color… Well, I think I would love to have bright yellow shoe laces or just go for the gusto and get bright yellow sneakers like our teammate Chad Leathers

And Angie Hallmark ((Enable Javascript to see the email address))

Angie is involved with the team because of her best friend, Erin Earle. “Without a cure Erin will not have the opportunity to continue to be the beautiful person that she is,” says Angie. Erin has NF2.

Angie likes to say that she is “running for love.” Below is what that means to her…

It means that we run with greater purpose.

It means that when we are tired, sore or busy…we run anyway.

It means that we run because we will not be helpless in Erin’s fight to survive this crippling disease.

It means that we will stand-up to those ticking time bombs in her body called tumors.

It means that we will not stop running until a cure is found, because Erin can not wait for a cure, we need a cure NOW.

We run for Erin, We run for all of those suffering with NF, We run for love, We run because finding a cure for NF is the only option!