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I write a lot of notes to all of you. This one is actually a shout out to your friends and family. Those who show up at your half marathons or marathons to support you. They cheer you on and congratulate you when you accomplish this life-changing event for which you have been training so long. They wear the neon T-shirts so you can find them, and they help us spread awareness about NF. They bundle up, find a good spot on the course and wait for quite literally hours for you to run or walk by.
I can also attest to the fact that they are, for the most part, just a little unfaithful to you too. I have caught them at almost every race cheering and encouraging thousands of runners who are ahead of you. They shout words of encouragement, ring bells and clap for hours. They even lie by telling these runners they look good, or that they’re almost done. They even cheer for those guys wearing the purple TNT shirts! Can you believe it? You should know this! Your friends and family are actually out there for hours before you get there, and probably cheering for all those people who are ahead of you. People who are going to beat you to the finish. The nerve! I hope that you will forgive them for this, but I thought that it’s my duty as your coach and director of this team to let you know what your friends and family are doing behind your back.
Honestly, I cannot say enough about the army of volunteers that I see nearly every week out there helping us spread the word about NF. Your friends and family are one amazing group of people. We all owe them so much. If you have never stood and watched a marathon waiting for a special someone, you should. It’s hard! I mean really hard. Your feet will hurt. Your hands will hurt. Your back will start to ache. You’ll get cold. Your kids will get cranky. I’m not downplaying the effort you’re putting forth. I know it’s probably the hardest thing you’ve ever done, but please know that your support crew is out there giving up their day to stand in the cold, or rain, or snow, or sometimes when we’re really lucky, sunshine, for you.
Thank them! I can’t tell you how many times I stand with families waiting for one of our teammates to come by so they can holler at the top of their lungs, jump up and down in congratulation, only to see their runner nod at them or quickly wave at them. Or, the runner throws a piece of sweaty clothing at them and then goes on plugging away towards that finish line.
Folks, I’ve got some news for you. You are probably not going to win the event. If you think you have a chance, by all means pass your family by without looking back. Don’t wave, don’t high five them, and don’t even say, “hi.” But for the rest of you, (I’d say the other 99.99% of you) take some time to acknowledge those waiting for you. High five them, stop for a picture, and give ‘em a big old sweaty hug. (Little sisters especially enjoy that big old sweaty hug.) I know you can’t stay long. You shouldn’t. BUT, take a few seconds to acknowledge those heroes who are there for you.
And another thing… You’ve trained a long time for that event. You’ve gotten up when you didn’t want to. You’ve done the long runs in the rain. You’ve done your part to get yourself to a point where you can accomplish something you probably thought you’d never do. ENJOY IT! Don’t fall into the mentality that this is the final exam. Think of it as more of the celebration after the exam is done. Relax, find your happy place and enjoy yourself.
GOODBYE SUMMER
Celebrate the last long weekend of summer vacation at the Rock ‘n’ Roll Virginia Beach Half Marathon with NFE. You can follow Steve, Joe and the NFE crew in Virginia Beach on Twitter (@NFEndurance). The NFE VA Beach Team has raised more than $17,000 for NF research. You can help them meet their fundraising goal by visiting the team page. Are you as excited about the fall season as we are? Check out our fall schedule here.
READ
Check out how the Ogle family organized a successful 5K in honor of Leo Ogle in this article. Read how they got creative when they ran out of bib numbers.
HOT, HOT, HOT
QUESTION Check out Dr. Kim’s answers to questions from the Foundation community about NF. She will be taking questions throughout the year — stay tuned!
WATCH
Trapped in indoors because of Hurricane Earl? Our training expert Anna Renderer’s treadmill blast will keep your training on track with this video showing a challenging set of exercises.
Active Fundraising Page of the Week
Check out Susan Keegan’s fundraising page here. She tells her story through well placed pictures, a compelling narrative and a clearly stated goal.
TAKE FIVE Five tips from Active.com on how to run in better form.
HOTTT
Steve Kendra has driven out to Texas for Hotter’n Hell, the largest sanctioned bike ride in the country, based in Wichita Falls. NFE will have more than nine riders braving hot temperatures to raise awareness and funds for NF. They have already met their goal of $10,000, but you can help them fund even more research by visiting their team page. One of the heroes for the weekend is Perrie Smith. Her dad, Darren, will be riding in her honor. Check out this article in the Times Record News on his efforts. To learn more about Perrie, read her story below.
Perrie Smith lives with more than 50 birthmarks all over her body. The biggest one is on her right leg; she calls it the birthmark the size of Alabama. When Perrie was younger, she had to get a tumor removed from her upper lip and she had to endure comments from kids at school. “When I go to the pool, I see girls and boys that have only one birth mark that is barely noticeable,” said Perrie. “If I am wearing shorts people sometimes stare at my leg which makes me feel kind of bad.” In dance class, girls would come up to Perrie and start counting the birth marks on her back. “I may have NF, but I am living a life that I want to live and not letting anyone get to me.”
RuNFor Leo
On Friday, Aug. 27, 2010, the K-Bay 5K will raise funds for the Foundation in honor of little Leo in Homer, Alaska. For more information, please e-mail Denise Ogle at (Enable Javascript to see the email address)
SYMPOSIUM If you live in Missouri, be sure and check out the Back to School Symposium hosted by the Foundation from 2:00 – 4:00 p.m. on Saturday, Aug. 28, 2010. The symposium will focus on “Advocacy for Learning Issues for Kids with NF.” Please join us as Dr. Joel Nadler provides back to school advice for parents on ways to advocate for their children in school.
TRAIN The fall running season will be here soon. Have you started training for your next NFE event? Be sure and take advantage of our online training plans or get in touch with one of our certified coaches for a personalized training plan. Do you have specific training questions you would like answered by our training blogging expert, Anna Renderer? Make sure to post our comments, and we will get those questions to her.
Q&A
You asked, we answered. Check out Dr. Kim Hunter-Schaedle’s answers to questions submitted by the Foundation community about NF. Don’t worry if you missed out on submitting your question. Every few months she will be taking Q&A’s submitted on the blog and Facebook. You can follow the Foundation by visiting www.facebook.com/childrenstmrfdn.
Here is one she answered for us.
Q. How many children are born with NF in the U.S. each year? A. NF affects one in every 3,000 children born each year in the United States (and throughout the rest of the world). The United States has 14 births per 1,000 capita per year, and a U.S. population of approximate 300 million. “By my estimate,” says Hunter-Schaedle, “this means there are 1,400 U.S. births affected by NF per year.”
ING NYC MARATHON
Don’t miss out on one of the most premier races in the country. Secure one of NFE’s last remaining spots for the ING NYC Marathon on Nov. 7, 2010. E-mail Molly ((Enable Javascript to see the email address)) for more information.
Perrie Smith lives with more than 50 birthmarks all over her body. The biggest one is on her right leg; she calls it the birthmark the size of Alabama. When Perrie was younger, she had to get a tumor removed from her upper lip and she had to endure comments from kids at school. “When I go to the pool, I see girls and boys that have only one birth mark that is barely noticeable,” said Perrie. “If I am wearing shorts people sometimes stare at my leg which makes me feel kind of bad.” In dance class, girls would come up to Perrie and start counting the birth marks on her back. “I may have NF, but I am living a life that I want to live and not letting anyone get to me.”
