Weekend Pacesetter (Aug. 27 – Aug. 29, 2010)

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.

Upcoming Events in September:
- Rock ‘n’ Roll Virginia Beach 1/2 Marathon • Sunday, Sept. 5, 2010
- Rock ‘n’ Roll Philadelphia 1/2 Marathon • Sunday, Sept. 19, 2010