We are sorry for the inconvenience, this is STILL the NF Endurance Energy Blog. We updated our WordPress version and it kind of messed things up... ehh errr... It should hopefully be fixed soon!
PICNIC
Join Steve and Judy Kendra and several NFE Staff Members for the annual NF Picnic on Sunday, July 11, 2010 in Sellersville, Pa., for an afternoon of swimming, delicious food and fun activities. For more information, and to RSVP, e-mail Trish ((Enable Javascript to see the email address)).
READ It’s worth the time to read Candice Patterson’s inspiring article, “Some Assembly Required,” on More.com. Candice wrote the article for More magazine’s One Amazing Thing contest. Candice heads up the Butterfly Challenge to support the Foundation, and she constantly looks for ways to use her life to help others. A heads up from Candice: some articles in her Butterfly Challenge Journals include adult language.
NFE XTREME
Check out photos from NFE XTREME at the Ironman France on June 26, 2010 in Nice.
Photos by Chad Leathers.
RUNCATION
Why not make your next marathon a destination to remember? Plan your next family vacation around one of these great race cities. To see more, click here.
SAN FRANCISCO – San Francisco Marathon • July 25, 2010 CHICAGO – Rock ‘n’ Roll 1/2 Marathon • Aug. 1, 2010
Bank of America Chicago Marathon • Oct. 10, 2010 VIRGINIA BEACH – Rock ‘n’ Roll Half Marathon • Sept. 5, 2010 PHILADELPHIA • Rock ‘n’ Roll Half Marathon • Sept. 19, 2010 TWIN CITIES – Twin Cities Marathon • Oct. 3, 2010 PORTLAND – Portland Marathon & Half Marathon • Oct. 10, 2010 DENVER – Rock ‘n’ Roll Marathon and Half Marathon • Oct. 17, 2010 NEW YORK – ING New York Marathon • Nov. 7, 2010 SAN ANTONIO – Rock ‘n’ Roll San Antonio Marathon and 1/2 • Nov. 14, 2010 ORLANDO – Walt Disney World Marathon Weekend • January 2011
TAKE 5
Click here for five great reasons to invest in the Children’s Tumor Foundation. Try incorporating Dr. Kim Hunter-Schaedle’s reasons into your fundraising letters and show donors how their dollars can make a difference. Also, you can follow the Foundation blog regularly for many scientific insights on NF research advancements.
Active Page of the Week: It’s hard to keep up with Roxanne Thomas — she seems to always be training, running in an event, or planning an activity to help spread awareness about NF. However, Roxanne’s Active giving page brings all of her activities together in a fun, festive way. Roxanne has run several 5Ks this summer, and she has been busy planning a “Hot Undies Run” with her daughter Carissa on Aug. 21, 2010 in Houston, Texas.
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.”
**Please type in Children’s Tumor Foundation when you get to this question: “If you are running or raising funds on behalf of a charity that is not currently affiliated with the 2010 Bank of America Chicago Marathon, we would love to hear about it.”
It’s hard to keep up with Roxanne Thomas — she seems to always be training, running in an event, or planning an activity to help spread awareness about NF. However, Roxanne’s Active giving page brings all of her activities together in a fun, festive way. Roxanne has run several 5Ks this summer, and she has been busy planning a “Hot Undies Run” with her daughter Carissa on Aug. 21, 2010 in Houston, Texas.
