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!
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.
CHASE
…down the cure! Join the Schmutzler’s in Carmel, Ind., for a 5K run/walk to benefit the Children’s Tumor Foundation. Chasing Down the Cure will start at 8:30 a.m. on Saturday, Aug. 21, 2010 at Northview Church (5535 E. 131st St.). All funds raised will be donated directly to the Foundation.
FYI: As an MD and PhD student, researcher and husband, Brian Schmutzler stays busy. In 2008 he found the time to create Chasing Down the Cure, a 5K Run/Walk to raise money for NF research. Nearly 100 participants ran the course designed especially for the Northview church property. Donated prizes helped acknowledge winners in overall and age and gender categories. However, the main focus Schmutzler said was on NF: patients, treatments and research. The event has brought together patients, healthcare professionals, family and friends through fundraising, running, and generating awareness. Scmutzler is also a recipient of the Foundation funded Young Investigator Awards, which enable young scientists to study and contribute to NF research.
HURRY
It’s not too late to run in one of the most premier races of running — the ING NYC Marathon. Join a team that raised almost $200,000 for research in 2009. For more information on how to get a slot, visit nfendurance.org/nyc or e-mail Molly at (Enable Javascript to see the email address). Hurry, these slots are going fast!
SIGN UP
Get accurate information on NF1, NF2 and Schwannomatosis by signing up on CTF’s website. Click here for five reasons why.
ANNA’S WEEKEND TOP 10 It’s hard to do: staying healthy on weekends as daily routines get shifted. Whether it’s a social gathering or a busy day of sports schedules and errands, here are some tips to keep your healthy nutrition choices in balance. Anna’s best advice? Cheat a little, but not a lot.
1.Snack on a big plate of veggies before going to a party or dinner.
This will fill you up on the good stuff; then you’re not as hungry at dinner. 2. Drink two glasses of water before dinner.
You will feel less hungry if you are properly hydrated. 3.Take a smaller portion than normal.
When making a plate of food, this tip can help eating too much. Have seconds if you’re still hungry. Plus, this will encourage you to eat more slowly. 4. Drink a glass of water between each glass of wine or cocktail.
This makes you less hungry and you will drink less calories too. 5. Limit your sweets to one, no one of everything.
If your craving the sweets, have just one of your favorites and eat slowly, enjoying it completely. If possible, eat half of it and save the other half for later.Your sweet tooth can get another taste later. 6. Fill half your plate with veggies.
When making a plate for dinner eat mostly the healthy foods (veggies, fruit, salad, etc.) and the other half with a mix of your carbs and protein. 7. Eat slowly!
It takes about 15 minutes after you eat that your body feels the fullness completely. Eating slowly allows the body to feel its fullness before you’ve eaten too much. 8. Wait for at least 15 minutes before having seconds.
Most likely you will feel too full by then. 9. Stand and Mingle (or take a walk).
This helps digestion tremendously and will help burn off calories from dinner. 10. 15 minutes of workout for every piece of pie.
Before taking a cookie, piece of chocolate, piece of pie, candy, or any sweet, make a deal with yourself…. commit to 15 minutes of cardio exercise that next day!
GOODBYE SUMMER
Check out Dr. Kim’s answers to questions from the Foundation community about NF. She will be taking questions throughout the year — stay tuned!
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.”
HURRY